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has any one tested neg. thru igenex?


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I will get dd10's results any day now. So many have tested positive, but I was wondering if any pandas/pans children have come back negative for lyme and all co-infections (thru igenex)? I guess I am trying to keep my hopes up.

 

I figure everyone on the lyme board was positive, so better to post here....

 

thanks

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The problem with Igenex (or other) Lyme et al testing is that for some, you can never "rule out" lyme to a concensus' satisfaction as long as you present with any clinical symptoms.....and let's face it, you wouldn't be here if you were absent all clinical neuro-psych symptoms. If you take an "Igenex negative result" to the Lyme forum, and report some IND bands or only band 41 positive, you could hear that result could really be positive and to keep testing with urine and dots/blots and so on or to see an llmd for treatment.

Your child's results will come back and then there are sometimes choices:

 

  • Your child is CDC and Igenex positive and no doubt has Lyme/Co's
  • Your child is CDC negative but Igenex positive....
  • Your child is both CDC and Igenex negative, but there is that pesky band 41 or an IND band here or there
  • Your child comes back clean as a whistle, no INDs, no positives at all (my younger dd actually had this result)

For my older dd, I've spent $1200 on Igenex testing; the full boat the first time and a WB re-run. For my once very symptomatic, currently 90% dd11, I have: a negaitve tick test from 2006 (actually sent the little creep), a 2010 negative WB via Quest w/band 41+, an Igenex and CDC neg WB from later 2010 still band 41+ IgG, 31 IND with questionable Bartonella, and a repeat Igenex and CDC neg WB from 2011 still with band 41+, 31 neg. My dd had a backslide and her doc started treating her for the questionable Bart with Batrim which caused sky-high AST and ALT liver emzymes, but no behavioral changes. We stopped, doc looked at results from repeat WB, pulled her off Bactrim and said no LDs.

 

My advice would be to examine your child's results with an open mind. I feel I have taken Lyme disease seriously through the multiple tests over years and Bactrim trial. But at a certain point, I was convinced in my child's case, Lyme/Co's is not an issue. Am I going to continue testing with urine and dots and so on; no. I'm satisfied with my Generation X skeptical and independent nature that I have come to the right conclusion for my girls. I am not going to keep testing to prove this to anyone else. Your child's results and history may lead you in a very different direction. If that's the case, there are some really knowledgeable folks on the Lyme forum to give you advise should you seek it. But if you are asking on the PANDAS forum if there are PANDAS kids who are negative for Lyme, I would say to the satisfaction of their parents and physicians, yes. If you determine Lyme is not an issue for your child, you will still have a place to work the problem as you see it.

 

BTW-my 90% kid (who was so incredibly, severely symptomatic for 7 years) gets to 100% with steroids; I'm still working the problem too.

 

Good luck and know whatever the results and your gut interpretation, there are lots of really smart folks on these boards to help you out.

 

 

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I questioned my son's PANDAS specialist about the seeming plethora of Lyme + tests from IgeneX. He stated that he has multiple patients who have been Lyme - from IgeneX. On an interesting piece, I have spoken with one of the leading researchers of Bart in the country. He stated that he believes that when both show up together, especially when the Lyme is "old" (can never remember if tat's igg or igm), he belives that the Bart is true and that the Lyme is a false +.

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Thanks everyone,

 

The main reasons for doing the igenex tests are that she is not 100% after 2 hd ivig's, and..............i have chronic lyme.

Judging by my own experience, I feel she might not have it. She doesnt have any herxing when she takes antibiotics, what else? um, we did see big improvement with ivig, original symptoms were directly connected to strep. I know that it will never truely be ruled out in my mind. I can blame anything on lyme (it annoys my family).

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Here is why I think Lyme should be taken seriously....... These are the kind of things that can happen when Lyme is improperly treated. Taken from a PM to me just two days ago. I could go on with similar stories...

 

"Spoke to Dr ? about that and especially children who have had multiple IVIGs, there is no way they are healed. Quite the contrary. The disease has morphed, modified the child's DNA and gone into hiding. NOT dormant, but hiding to regain full strength. He introduced me to a 15 year old girl from California, his patient who was being chelated that day who has had multiple IVIgs, herbal protocols for 6 to 7 months and been told she was healed. 5 years later she wakes up with a heart almost in failure, legs swollen with edema and critical- overnight her mom told us, no warning."

 

Unfortunately, determining if its Lyme and treating is not easy, usually the child is worse before better and it can take many months for some to see improvement. It truly takes skilled LLMD to assist in the process of testing, evaluating and experience in treating TBI. Unfortunately good LLMDs are about as hard to find as good PANDAS Dr. I personally would take every available measure to rule out LD properly.

 

This is complete 3rd hand rubbish and off-topic.

 

Members should post their own stories about their pandas child who does NOT have Lyme, which is the topic here.

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2 PANDAS boys here who are negative for Lyme and coinfections. But, what does it matter anyway? If you get a negative IGENEX result....your kid will still be positive because of the Lyme "specific" ind or positive bands. So, be prepared for a "positive" IGENEX result even if it states negative.

 

 

 

 

"The disease has morphed, modified the child's DNA and gone into hiding. NOT dormant, but hiding to regain full strength."....quote from Sf Mom's post.

 

I read soooo many blanket statements such as this about Lyme.......seemingly to come up with something, some kind of explanation to explain the unexplainable. Like the above statement...and, the statement that a positive IGM and negative IGG after being ill for a long time means chronic infection. What I can't find is ANY research studies, actual hard evidence that any of these kinds of statements are true. Nothing. Did they find actual spirochettes in the blood/bodily fluids of a chronic IGM patient??? (with a negative IGG) If so...I would love to see some kind of evidence like that. All the actual research studies that I have read report findings quite the contrary to these kinds of statements. How in the world did the doc referenced to in the above quote come to the conclusion that the disease morphed...changed the child's DNA..etc? (I am assuming a doc made these statements...or, was it a parent) What kind of testing was done to come to that conclusion? Did anyone look at her actual DNA (very detailed and expensive test...can almost guarantee that no Lyme doc can run this sort of test) and find where it morphed and changed?? How does anyone know they are hiding....cause..how could they find them then to know they are hiding?? Where are the research studies to back this stuff up....no, I don't want explanations on what "this leading doc said....", ...or, "this video says...." etc. I want actual scientific evidence to back it up. Like how Cunningham injected mice with strep antibodies and the mice developed obsessive and repetitive bahaviors....I want that kind of proof.

Edited by P.Mom
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Well, we never went the Igenex route, but my son was tested repeateadly at the beginning of our journey (the doctor said "PANDAS with underlying Lyme" on the very first visit). Test after test, even through specialty labs, all negative for Lyme and co-infections. So we left that LLMD and went to a PANDAS specialist. Saw good results but always kept sliding back. Two and a half-years later, all the while on antibiotics, he gets four bands positive through Labcorp right before plasmapheresis!!!

 

So, there is no way to be 100% sure one way or the other. Follow the treatment that seems to give you the best results, but before proceeded with something more intrusive like IVIG or plasmapheresis, I would recommend checking again, just in case.

 

Just our experience.

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Our ds tested indeterminate on Igenix for Lyme and 1 co-infection (ehrlichiosis). We are seeing a local LLMD we really like, and he does not believe our son has Lyme or ehrlichiosis but continues to prescribe augmentin XR for PANDAS. Here's a thread on the topic:

 

http://www.latitudes.org/forums/index.php?showtopic=11408

 

From this old thread and your current one, danddd, you can see that this question inspires passionate debate (kinda like between Republicans and Democrats in DC ;-) on this forum. Bottom line: PANDAS and Lyme / co-infections are both in the broader category of PITAND, and the clinical lines between them get very blurry. It's brutally hard to distinguish between them, with either current lab tests available or clinical picture.

 

I think LLM said it well several times in her posts. If your child isn't improving on one treatment regimen under one diagnosis, keep testing and searching until you find the treatment(s) that work best. Nobody really knows all the answers yet, including the "medical experts" specializing in both PANDAS and Lyme.

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Pandas 16: I am sorry you do not see my other post. It clearly states I do not think it is all Lyme and there are ways to build a case that makes Lyme 'more likely or less likely' outside of just testing via Igenex. I actually believe Igenex testing can be very misleading to some. Two of my children were clearly serologically negative and still had Lyme.

 

Regardless this thread has taken a turn for the worst. I do not appreciate the personal attacks regarding our family's story being relevant to the topic and owed an apology. But, that is my perspective. I often do not like some of the discussion about steroid use over on Lyme forum but I never attack those PANDAS moms posting their stories because it has worked to get their children well. There no longer needs to be the debate if Lyme is issue for many PANDAS children. There are far too many children now being successfully treated for Lyme et al that were once being treated for PANDAS. You can call it whatever you like but the PANDAS Dr. would be well severed to pay attention to some of the protocol's used by LLMDs ensure those with just PANDAS or other chronic infections have sustained recoveries i.e. detox, biofilm treatments, testing for mineral deficiencies, viral component, etc.

 

As you know..... and I know you did the research. Strep has an L form and it exist in Biofilms along with many other bacteria's. As for DNA swapping, I'll let you do the research on that.

 

I couldn't agree with this statement more "If your child isn't improving on one treatment regimen under one diagnosis, keep testing and searching until you find the treatment(s) that work best. Nobody really knows all the answers yet, including the "medical experts" specializing in both PANDAS and Lyme".

 

 

-Wendy

Edited by SF Mom
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