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Has anyone tested negative on IGNEX?


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Just wondering whether those that had a + Western Blot BEFORE having the Cunningham test done, did you notify Dr Cunningham to let her know you were also positive for Lyme? I did, she said was grateful, that this was important to know for her research.

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By the time people go ahead with Igenex test, it's because they have reached a place where they are highly suspicious of lyme -- and thus the positive test. Including lots of posters on this board. Of course there are negative igenex test results out there -- but again you are not likely to find them on this board because the people who do go ahead and test probably are dealing with lyme. Regarding conspiracy, I don't think Igenex has anything to gain by handing out false-positives -- it's not like they are selling the drugs that cure lyme. I know you are mostly kidding, but I don't want anyone to discount the accuracy of these tests -- as they are the most sensitive testing out there.

 

At the end of the day, it's a clinical diagnosis. And what matter MOST is that after a person begins lyme treatment is DO THEY FEEL BETTER AND FIND SYMPTOM RESOLUTION? I'm sure that you will find the vast majority of "positives" would say "YES!"

 

Regarding Dr. Jones and Band 41, I'm not sure that "no significance" would accurately portray his opinion. Of course, he is quite skilled at making the clinical diagnosis in conjunction with the lab results.

 

Just a related thought/infoI remember reading here that Band 41 is a double star band for Igenex. So if band 41 is positive on Quest western blot testing then it was probably a false negative ruling for Lyme with Quest.I spoke to Dr Jones the lyme doc yesterday and he said that only Band 41being positive was of no significance. I am confused.I am going ahead and doing the Igenex testing anyways.Its curious why hardly anyone has come up negative on Igenex testingSometimes conspiracy theories swirl in my head for no reason LOL!

 

I want to be clear that I am NOT questioning the validity of the IGENEX testing. What I am wondering is if Lyme is the true underlying culprit that starts the immune system mess that results in PANDAS. I FULLY believe IGENEX is accurate, but I am wondering if all kids with PANDAS should be getting IGENEX tests to help to clear underlying lyme infection before going on to PANDAS treatments such as steroids and IVIG.

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I am going to repeat my post that I put on a different Lyme post. My son was tested for Lyme by Dr. Brian Fallon at Columbia University. He is an internationally known Lyme expert. My PANDAS son tested negative on all Lyme and tick borne illnesses. This also includes negative on band 41. My understanding is that if Dr. Fallon says you don't have Lyme - you don't have Lyme.

Thank you so much - that does help answer my question! Did you do Cunningham test? I am wondering what his Cunningham scores might have been.

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Deet for the kids when playing outside and spraying yard for tics. Others might chime in with more.

Dr. Kenneth Singleton addresses this question in his book The Lyme Disease Solution. He recommends Avon's Bugguard Plus with Picaridin, not deet. Deet is toxic and it is unclear whether it really works for ticks according to what I have read. Any natural tick repellent (like from whole foods) is probably fine too.

 

These are suggestions for things you can do to protect your family:

 

1. Wear a tick repellent whenever you are outside on grass, in the woods or on the soccer field. Avon’s Bug Guard Plus Picaridin repellent is recommended by lyme experts. Deet is toxic and is not recommended for application to skin. Some believe that products containing deet actually attract ticks.

2. Wear a hat when outside in an area near ticks to limit a tick’s access to your head.

3. Tie back long hair so it is harder for a tick to get swept into your hair.

4. Consider treating clothes, hats and shoes with Permethrin, a chemical that kills ticks, especially when going hiking or camping in a high-risk area. Permethrin is toxic and must be handled very carefully but it can provide an extra level of protection.

5. Wear long light-colored pants tucked into socks while in the woods or in areas with a lot of ticks.

6. Wash you hair with a peppermint or tea tree oil shampoo that repels ticks. Experienced campers recommend using Desert Essence Therapeutic Treatment Shampoo for treatment of head lice (available at Whole Foods) prior to camping to prevent tick attachment on the scalp.

7. Perform complete tick checks during tick season (which is most of the year in Maryland-March to November). Experts recommend that you check every few hours but at the very least check your kids before they go to bed! Keep a tick kit in your car in case you need it on the go.

Ticks like to attach to parts of the body that you might not be able to see well such as under arms, behind knees, on the head, behind the ear or in the groin area.

8. Don’t expect to feel a tick bite. Ticks inject you with a numbing substance so you do not usually feel the bite.

9. Carefully remove ticks with a tweezer or other tick remover (such as this device that veterinarians recommend: http://www.rei.com/product/407279) and clean area with an antiseptic. Wear gloves and do not use Vaseline or a match. The State of Maryland provides instructions here: http://www.cha.state.md.us/edcp/vet_med/ld_prevent.cfm#remove.

10. Save any tick you remove in an airtight container. You can have it tested for Lyme Disease and/or other tick-borne illnesses later if you or your child get sick. This really helps with any future treatment should you get sick. Note the date and location of the bite. Many states offer tick-testing for Lyme Disease and Igenex Labs in California (http://igenex.com/Website/) will test ticks for Lyme Disease as well as other tick-borne diseases for a fee. Given how unreliable the patient testing is, knowing what diseases the attached tick carried can help the doctor decide which treatment is best.

11. Don’t track ticks in the house. Ticks can get into your house on shoes, pets or clothing worn outside. Keep your shoes by the door so they don’t track ticks into your house. Put clothing (or sleeping bags from camping) that might have ticks on it in the dryer for 30 minutes to kill any ticks. It is risky to sleep with any animal that spends time outside, even if the pet is treated with tick medicine. Ticks can hitch a ride in on the pet and fall off inside.

12. Tick-proof your yard. Get rid of brush and fallen leaves, move wood piles away from play areas, keep the grass cut and treat your yard with pesticides (natural or synthetic) to kill the ticks. The CDC has these and other recommendations you can follow: http://www.lymediseaseassociation.org/. Naturalawn of America offers a natural tick treatment that kills ticks that they recommend applying from March through October. There are also a number of natural tick repellents you can apply yourself that you can buy on-line or at your local garden center. A combination of these approaches along with the tick repellent can significantly reduce the risk of ticks. Daminex sells Tick Tubes, cardboard tubes filled with cotton balls soaked in Permethrin that kill ticks on mice without harming the mice. You can also make your own tick tubes using PVC, old carpet or other material and Permethrin. http://www.ticktubes.com/

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kimballot -- i think this is an interesting quesion. my son has been diagnosed with lyme also so - i am aware of lyme posts. perhpas a poll is in order, for those that have tested, was it positive or negative. i believe - just off the top of my head -- phillyPA is the only one on this forum i have heard of that has tested for lyme and been negative. but, i'd like to know if there were more also.

 

most lyme drs would say that it is lyme that starts the whole mess. our dr doesn't really want to state that. my son has had multiple infections. our dr just says something along the way began the mess but thinks there's not really a way to discern which it was. not so much a point of argument on this forum -- just stating our experience and what our dr believes -- who is treating my son for these multiple infections.

 

i would be curious the role that infectious disease affects the immune system and if what tests as immune compromised is actually the immune system trying, perhaps unsuccessfully, to fight an active infection. i admit i don't know much about immune deficiencies but wonder if that concept has been explored. just really talking off the top of my head.

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79. Carefully remove ticks with a tweezer or other tick remover (such as this device that veterinarians recommend:

 

 

i saw in bed, bath and beyond the other day a tick remover. it was a larger hole that you slide down and then can lift the tick off properly. i think it was under $5. not sure how well it works but may be easier than tweezers.

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kimballot -- i think this is an interesting quesion. my son has been diagnosed with lyme also so - i am aware of lyme posts. perhpas a poll is in order, for those that have tested, was it positive or negative. i believe - just off the top of my head -- phillyPA is the only one on this forum i have heard of that has tested for lyme and been negative. but, i'd like to know if there were more also.

 

most lyme drs would say that it is lyme that starts the whole mess. our dr doesn't really want to state that. my son has had multiple infections. our dr just says something along the way began the mess but thinks there's not really a way to discern which it was. not so much a point of argument on this forum -- just stating our experience and what our dr believes -- who is treating my son for these multiple infections.

 

i would be curious the role that infectious disease affects the immune system and if what tests as immune compromised is actually the immune system trying, perhaps unsuccessfully, to fight an active infection. i admit i don't know much about immune deficiencies but wonder if that concept has been explored. just really talking off the top of my head.

 

I believe Faith's child tested completely negative for Lyme including 41.

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We did not test for Lyme prior to my son's IVIG treatments. We have been treating our son with a 'Lyme like' antibiotic protocol since May with great results. We have since tested two of our children for Lyme and they are both positive for double starred bands (IgG and IgM) but overall negative result from Igenex. Igenex recommends retesting in another 4 to 6 weeks with other methods with the results we have (one has had IVIG and one has not..... almost identical results). Because I have symptoms and our son did well on a 'Lyme Like' protocol we are seeing Dr. Steve Harris for further testing and clarity next Monday.

 

So, we are in the middle of figuring things out 'potentially'.

 

-Wendy

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So, reading this thread makes me feel like I have bugs crawling on me! (scratching my head)

 

Wondering how IVIG affects Igenex testing? Allie gets monthly IVIG, so there's probably very little of her own IgG circulating....

 

Now that I no longer have docs looking at me like I'm a crazy person, I really hesitate to go down the lyme avenue. I know that's a crappy reason to not pursue testing... but, there it is. Its finally gotten to the point that most of the doctors we see (still not all) no longer act like I'm a crazy person who imagines my kid has every disease I read about on the internet.

 

Once it was established that my daughter had symptom flairs with chronic strep, we really did not check for other infections- thought we had it figured out.

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I think it should be clarified here (and also if a poll is done) that testing positive for SOME bands on the IGM or IGG western blot (whether IgeneX or another lab) does not mean the overall test result is positive. However, just because an overall test result is negative, it doesn't mean a person does not have Lyme.

 

I do believe IgeneX testing is accurate, and I have heard of negative IGeneX test results (with only a few positive bands) on other Lyme forums. I do think, though, that there can also be false positives... particularly on the IGM. In addition to syphillis, certain viruses (Epstein Barr, Herpes Simplex, etc.) and other flaggelar bacteria (E. coli, H. pylori, Salmonella) can cross-react at certain bands (31 and 41 especially) of the western blot and make the band appear indeterminate or positive. IgeneX even states this possibility on the results. One study I read indicated that over 40% of the 'normal' (non-Lyme) controls tested positive for band 41, likely due to exposure to one of the flagella-type bacteria.

 

My son's LLMD said esentially the same thing that was reportedly said by Dr. Jones... that a positive band 41 alone, with no known history of a tick bite, is not enough to determine Lyme.

 

This article explains the sensitivity and specificity of IgeneX criteria compared to the CDC criteria for determining a positive or negative result. It's long, but very informative. You will see that they do report a few false positives, but overall have a much better detection rate for late-stage (chronic) Lyme.

 

http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170380/

 

I am in NO WAY trying to steer anyone away from Lyme testing or a possible Lyme diagnosis. Quite the contrary... as I am confident in my own son's Lyme diagnosis. However, I do think it is important to consider testing for some of these other infections (EBV, HSV, etc.) if there is no known history of a tick bite. This would help rule out a false positive result and ensure you don't go down a path that you don't need to. (It's not a fun one.)

 

That being said... I agree with some of the other posters that Lyme can truly be the underlying monster that can "look like" a thousand other things. Other infections can come and go, while the borrelia remain. In worse case scenarios, because of the weakened immune system, a layering of chronic infections can occur. It's horrid! I agree that a good LLMD can help sort it all out, but not all LLMD's are created equal (as in any field). Go in educated.

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So, reading this thread makes me feel like I have bugs crawling on me! (scratching my head)

 

Wondering how IVIG affects Igenex testing? Allie gets monthly IVIG, so there's probably very little of her own IgG circulating....

 

Now that I no longer have docs looking at me like I'm a crazy person, I really hesitate to go down the lyme avenue. I know that's a crappy reason to not pursue testing... but, there it is. Its finally gotten to the point that most of the doctors we see (still not all) no longer act like I'm a crazy person who imagines my kid has every disease I read about on the internet.

 

Once it was established that my daughter had symptom flairs with chronic strep, we really did not check for other infections- thought we had it figured out.

 

Peg,

 

I hear you! Reading that list from Lyme mom on how to prevent ticks makes it seem as impossible as preventing strep! They are ticks and strep is everywhere. But if you don't get "the bullseye rash" and don't get symptoms sometimes for years, how do we have a fighting chance? At least throat cultures are inexpensive and accessible. How often can you run Igenex testing to check and make sure you are all still okay? Rhetorical, of course.

 

I can't get that image from Monster's Inc., where the one monster has a human sock stuck to him and he's "decontaminated." We need a process like that for all of these minuscule offenders reeking havoc on our lives!

 

What percentage of ticks pass on Lyme disease?

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So, reading this thread makes me feel like I have bugs crawling on me! (scratching my head)

 

Wondering how IVIG affects Igenex testing? Allie gets monthly IVIG, so there's probably very little of her own IgG circulating....

 

Now that I no longer have docs looking at me like I'm a crazy person, I really hesitate to go down the lyme avenue. I know that's a crappy reason to not pursue testing... but, there it is. Its finally gotten to the point that most of the doctors we see (still not all) no longer act like I'm a crazy person who imagines my kid has every disease I read about on the internet.

 

Once it was established that my daughter had symptom flairs with chronic strep, we really did not check for other infections- thought we had it figured out.

 

I can sure relate to your post, I was hoping we had it figured out too......b/c it's way more complicated than just having PANDAS alone. I've given up on not looking crazy! :wacko:

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