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has any one tested neg. thru igenex?


danddd

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Powwow- I am quickly posting this because my husband is getting annoyed that I am checking in on this forum. He is threatening to post under my name and has warned me that if I keep this open he is going to comment under my name. He is a physician and is calling this thread the land of nuttiness.

 

Read the book, at least the first couple chapters of Encephalitis Lethargica:During and After the Epidemic by Joel Vilensky PhD. It lists a page full of diseases that look like encephalitis lethargica. It includes pandas and lyme. Make sure you get them all checked out. Make sure your child was tested for all of them. Every child who has an overnight personality change needs a spinal tap. For disease like NMDA, and other auto-immune types of encephalitis, this isn't automatic. Your physician or even your neurologist is not usually a research scientist. These research scientist are usually at big university hospitals. Find the disease you are looking for and google it. Find the research articles on the disease. Look to the authors who have studied the disease. Look for one in your area if possible. If not, go to the researcher closest to you. Make an appointment with the research scientist/M.D. at the university hospital and get it checked out.

 

Also, if your child is CDC positive for Lyme and or anything else, I would not doubt the results. Especially, if two different labs have confirmed those results.

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"Also, if your child is CDC positive for Lyme and or anything else, I would not doubt the results. Especially, if two different labs have confirmed those results"

 

 

This depends. Are they CDC positive for IGM or IGG? Big difference here. CHildren who have been sick longer than 2 months should have an IGG response to Lyme if their illness is due to Lyme...period. I know you get folks saying that chronic positive IGM and No IGG is chronic Lyme....body keeps recognizing it as a new infection etc. But, these are complete speculations. To me it seems they are thrying to figure out why someone with symptoms is only, consistently IGM positive even after being ill for quite some time. So, they come up with that answer. There is NO scientific evidence or research studies to back it up.....it is a complete guess. So, please be very careful and get second opinions if you are treating a CDC positive (or IGENEX) IGM only. Contact infectious disease docs...not just LLMD's....give Cunningham a holler...she has studied/researched Lyme and strep. Gather research, then make a very educated decision. Please do not rely on blanket, unproven statements.

I, myself, am a chronic positive IGM (CDC standards) person. I was told I had Lyme by a LLMD. IV antibiotics (picc line)...years of orals for nothing. I am still, and will likely always be ...IGM positive for Lyme. After years of treatment...still IGM positive and IGG negative. It really means nothing in the event of long standing symptoms. All subsequent opinions I sought out from researchers on Lyme and infectious disease docs said I never had Lyme and should have never undergone the heavy duty abs and the risks of the picc line. Only the LLMD I saw said I had Lyme. IGM is so very cross-reactive with so much "stuff".....yeilds a high rate of false posiitves in patients ill longer than a couple months. It even says so on the testing. Don't ignore that. Please...if you are treating an IGM....please get educated , take a step back and start seeking out other opinions.

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Whoa,

 

 

I think the whole controversey with Igenex and Lyme is that when you typically find Lyme, you typically find A LOT more than Lyme and that can really be a lot to swallow. I have an Igg P41 and IgM P23. One of these bands is very specific for Lyme, its the outer surface protein, theres absolutely no way I can say, not Lyme. When I went to see Dr. Bouboublis in CT, he ran others like Mycoplasma and sure enough I came out positive. Then when I ran food sensitivity tests, sure enough I had over 10. Food sensitivities are caused by leaky gut, leaky gut is cause by parasites. Parasites cause nutrient deficiencies and it goes on. Its alot to swallow, I contemplated seriously an LLMD but then I thought wow I was on antibiotics my whole life and ten years later Im just as bad which is why I chose homeopathy. Im currently off all antibiotics and I have strep and Im fine with a strep nosode.

I think the problem inlies that Igenex is often grouped together with LLMDS and some LLMDS have really caused people a lot of harm despite their efforts. Long term high dose antibiotics are really really dangerous. They completely destory gut flora, they provoke bacteria that was originally dormant, simply put, they hurt people. However, you can have Lyme and go about it in a lot of different ways.

 

Also I think its important to note that although Lyme stresses the immune system, STREP is what causes PANDAS. STREP in many cases is probably the original trigger and then the Lyme just makes the body so weak that it cant fight the strep hence the reason PEX doesnt work....strep is still there. If you have a positive culture and an abrupt onset of tics and OCD i dont care what you say, you have PANDAS.

Well put, PANDAS16!

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Powwow- I am quickly posting this because my husband is getting annoyed that I am checking in on this forum. He is threatening to post under my name and has warned me that if I keep this open he is going to comment under my name. He is a physician and is calling this thread the land of nuttiness.

 

Read the book, at least the first couple chapters of Encephalitis Lethargica:During and After the Epidemic by Joel Vilensky PhD. It lists a page full of diseases that look like encephalitis lethargica. It includes pandas and lyme. Make sure you get them all checked out. Make sure your child was tested for all of them. Every child who has an overnight personality change needs a spinal tap. For disease like NMDA, and other auto-immune types of encephalitis, this isn't automatic. Your physician or even your neurologist is not usually a research scientist. These research scientist are usually at big university hospitals. Find the disease you are looking for and google it. Find the research articles on the disease. Look to the authors who have studied the disease. Look for one in your area if possible. If not, go to the researcher closest to you. Make an appointment with the research scientist/M.D. at the university hospital and get it checked out.

 

Also, if your child is CDC positive for Lyme and or anything else, I would not doubt the results. Especially, if two different labs have confirmed those results.

 

Philly --

 

BIG fan of your "go to the research scientists!" :wub:

 

I absolutely have found more and better information via the research professionals than any practicing physician. Unfortunately, though, most of them have told me upfront: "I don't treat patients. I conduct research. You'll need to go to a physician for treatment." And then I take the research and I go to a physician, sometimes even a physician affiliated with the very same institution of the research scientist, and I am inevitably told: "But this is new research; it will be many years before we will be able to develop true findings, let alone treatment protocols, via this research. Meanwhile, X, Y and Z have been proven to be effective for treating [PUT YOUR ISSUE IN HERE -- FROM STREP TO OCD TO ASD],and that's the protocol I'm comfortable pursuing with your son." I've been met with this or nearly identical responses on multiple occasions, whether I was exploring d-cycloserine, riluzole, namenda, long-term abx, etc.

 

So, how DO you get past research to ACTION?!?! :blink:

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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

I sent in a deer tick that was negative.

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A-men, sister!! I've wondered the same things.....

 

 

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.

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I am going to add our story, and try to bring the thread back to the original question.....

 

I have two daughters with PANDAS. Both had sudden onset of ocd (with other symptoms) at the time of positive strep culture. Both have responded very well to pandas treatments, however, it has not always been smooth, and they do relapse with triggers other than strep. We have taken the approach of aggressive management. My personal opinion is that this is an autoimmune disorder, with a possible genetic vulnerability. While no one would love a "cure" more than me, I have begun to feel that spending my days yearning and searching and experimenting for a cure is a mistake, and that I need to focus all of my energy in keeping them in remission.

 

So, last year, when the forum was on major lyme overload- I started thinking. I started wondering if my kids could have chronic lyme, or, if maybe chronic lyme treatment was the key for PANDAS. We decided to pursue Igenex testing, partially hoping to just put it to bed, partially hoping to give lyme treatment a try. Both of my girls came back IGG negative, IGM positive. It is a long story, but here are the final results:

 

all mainstream docs told me lyme was not an issue for my girls

two docs that do treat chronic lyme, and are connected with a well respected lyme researcher agreed that lyme was not an issue for us

an llmd diagnosed them with lyme

 

we tried multiple antibiotics on both girls for several months. We had no results- no herx, no improvement, no worse, nothing.

 

Eventually, I became TOO concerned with the unintended consequences of all of the meds. At the same time, both girls contracted strep while on multiple abs, and I realized the pediatrician would think I was NUTS (my peds are pandas believers- no issue there, or with one antibiotic.) We discontinued lyme treatment.

 

Lyme treatment made no difference for us. What has made a MAJOR difference in my kid's life has been steroids. This is why I get SO concerned about the lyme/ pandas issue. This is why it is very important to get it right. Steroids are a MAJOR tool to manage/ treat pandas. Taking steroids off the table for fear of lyme, if this is not the case for your child, is a tragic mistake.

 

My kids are as healthy as ever. They look great and feel great. Their ocd, right now, is very minimal. I am certain they will relapse, and we will handle it.

 

Over the summer my girls took NO meds, no antibiotics, and did great. Now, they are on antibiotics 2x week (prophylactic), probiotics once per day, and normal child dosing of Vit D. This is it.

 

My kids had no neuro/ behavior/ cognitive issues prior to pandas. They had sudden onset (over 4 weeks) of ocd. They had confirmed strep infection. Maybe the mistake on this forum is that we open our doors to everyone and want to see pandas everywhere- and so therefore we continually insist these criteria do not need to be met for pandas. Maybe this is why so many were misdiagnosed as pandas (autoimmune disorder) when what they have is lyme (chronic infection).

 

I am personal friends with some of the lyme parents, and am interested in their perspective and personal advice. I do, however, take offense to posts that insist on information that puts fear into others, and states theory and hypothesis, and thoughts of a small group of doctors as fact. Lets agree that this treatment regimen of lyme is not mainstream medicine. I am not saying it is incorrect, and am not saying it is not helping- but it is not mainstream healthcare/ science.

 

I do feel it is very hard to close the door on lyme. We have done so by some common sense (thinking about the clinical symptoms), and by trial and error, and in the end, following what works. I have read many things on lyme- we know obviously antibody tests are inherently flawed. I have read something about how a HUGE percentage of people have been exposed to lyme- I can believe it- but then how would one determine if lyme is the problem, or if tests may indicate lyme exposure, yet there is another illness at play. If one has pandas, and are treating lyme- how would you know when to stop- because theoretically you cannot use symptoms as a guide.... It is very complicated, and there is great meaning in a diagnosis and a label- and that is treatment. It is important to get it right- because as I (and other pandas parents will say) steroids are a literal life saver- however, lyme parents will tell you they are a danger. That is the issue (in my mind) in a nutshell.

 

I hope this is a calming, and not confrontational post- because I didn't meant it that way. Our story is different than others- and think it is important to share. I agree with LLm's post that different tones, and wordings should be used according to what board you are on. Frankly, that is key. I don't think anyone has jumped on llm discussing lyme on the pandas forum- but she doesn't state that our kids' are basically doomed if we don't treat for lyme.

 

We have more in common, than what separates us. WE all need emotional support, and ideas on how to deal with our kids and their issues on the day to day.

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My dd was diagnosed with PANDAS in spring 2009. At the time, Dr. B. had tested ran an ELISA and Western Blot through a standard lab and the results were negative. She was put on Zith and responded well for about 6 months then declined, we thought, due to strep exposure in her brother. After clearing him with no improvement in her, we tried the steroids. She handled them well, no agression, but her OCD did not improve (she was just a happier OCDer).

 

Anyway, Dr. said test through IgeneX for both my (nonPANDAS?) son and daughter. My son's IgeneX for Lyme came back CDC and IgeneX negative, but positive by later LLMD's interpretation. (I say nonPANDAS, because he didn't have any tics or OCD...but I must say there was fatigue and emotional lability.)

 

I'm digressing a bit, so getting to the original question, my PANDAS dd was negative on all IGM and IGG IgeneX bands, with the exception of 41. She was indeterminate on one and ++ on another.

 

She did, however, test positive for Bartonella. At the end of March 2011, we started treating for that with an additional antibiotic. She has improved slowly, but continuously (with some initial major herxing). She is doing , really, really well right now (thankfully). The LLMD we saw said the combo also worked for Lyme, so that comforted me a bit given all I read about it being possible even with negative testing.

 

An interesting side note, though. A week or two ago I looked back at the original Western Blot ordered by Dr. B in 2009. Even though it was negative, there was one of those bands that is considered "specific" to Lyme that showed up. Just one, though. I imagine some LLMDs would say this was Lyme and others would say it's not. I just found it really interesting. Did the year on Zithro prior to the IgeneX testing cause that to go away? No idea.

 

Unfortunately, I don't think any of it is straightforward. I have to agree with the recommendation that if your child is not getting better, keep digging. Sometimes the path to follow will be clear, but most often a difficult decision will have to be made.

 

In hindsight, with the info I have now, I would not have done the steroid. However, I must say that with the information I had at the time, I made the best decision I could. So I don't regret it. And I would make the same one again if that was the only info I had...

 

See what your IgeneX results say and then make the best decision you can with the information you have.

 

Best wishes,

Kara

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thanks everyone for the 5 pages! wow, usually my posts only get a few responses. anyway, guys, i believe that both pandas and lyme are horrible, neither should ever be ignored or underestimated, and neither are fully understood. i see some have no lyme, but, you all have good points, actually i did not read ALL the posts, it was too much!

 

how about this: lets all try to find the miracle of being happy, despite our children or ourselves having illness. i will let you know if i find anything (besides patting my old dog).

 

hope everyone has a good moment or 2 today! thanks, dan.

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thanks everyone for the 5 pages! wow, usually my posts only get a few responses. anyway, guys, i believe that both pandas and lyme are horrible, neither should ever be ignored or underestimated, and neither are fully understood. i see some have no lyme, but, you all have good points, actually i did not read ALL the posts, it was too much!

 

how about this: lets all try to find the miracle of being happy, despite our children or ourselves having illness. i will let you know if i find anything (besides patting my old dog).

 

hope everyone has a good moment or 2 today! thanks, dan.

 

 

ON MY GOSH! You are a man! HAHA That strikes me as hilarious. The thought never crossed my mind. No wonder we hadn't heard from you in a day or so. Someone mentioned you probably went running for the hills or something like that after seeing the responses....also mentioning you "only" had ninety something posts. Well...nope...You posted...then checked in a day or so later. Just doing the man thing. In the meantime.....we Moms were checking the forum every hour since you posted...maybe even more. (you all know it is true) Also, no wonder you didn't read the whole thread! :lol:

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Someone mentioned you probably went running for the hills or something like that after seeing the responses....also mentioning you "only" had ninety something posts. Well...nope...You posted...then checked in a day or so later. Just doing the man thing. :lol:

 

 

a relatively 'new' person with 98 posts

 

 

that's not actually what 'someone' said -- why don't we stick to what we have to say for ourselves rather than tearing down or sarcastically commenting on what others have said!

 

Peace OUT!

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I stand by my post 100 percent! It was made without an ounce of sarcasm, etc. Those comments where I referenced "running to the hills....and the mininmal posts" ......well I referenced them because I thought they were FUNNY in the context of this thread and Danddd ending up being a man. You obviously don't see the humor in it like I do. You got this one WAY wrong! So, let's keep our comments about someone's misperceived intentions to ourselves before we tear down someone's post that was made in a purely humorous way......cause you may just miss the point! Peace OUT!

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