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My kids (15 & 18) took the Igenex Lyme screening in August. I never heard anything from the doctor and at the time, Igenex called requesting payment, I told them that I didn't have $800 (2 kids with PANDAS) so I thought it was never completed. Apparently my insurance DID pay for it, Igenex apparently called our local hopsital and they provided insurance info. I never knew this. Then in Dec. My son, after 18 months of antibiotics and 2 IVIG (which many doctors told me were serious business and could cause serious side effects) was getting worse. I was going to bite the bullet and sell a kidney if I had to , to get the test from Igenex.

 

Imagine my surprise when they told me that the test was completed FOUR months earlier and sent to the doctor. OK.... So I went to the hospital and received a copy after the doctordid not return my call or email. Upon looking at the Igenex results, each page gave a negative result at the top of it, BUT when reading the test, It said if a IND (for indeterminate) was present on any of the 4 Lyme specific bands, this could be a mild positive. Not trusting myself or interpretation, I asked our wonderful PANDAS friendly pediatrician Dr. Maura Price to look and she agreed with me that this indeed what the test said. OK, I'm a bit angrier now.

 

I then spoke with 2 different Mom's I met on this forum who have had multiple high dose IVIG's and their kids are not better yet. They told me that they were told their Igenex test was neg. When they looked at the actual results, they were just like my kids. IND on the important bands and some + which is a definite positive.

 

So my two kids, and the child of each of my two PANDAS moms, all took the Igenex test, they were told negative, I was told nothing, and this test is easy to read and interpret, HOW MANY others think their Lyme was negative and it's not?? I realize this is a little gray as the Official result was negative, but if I can easily see that the IND is a mild positive, and I'm not the doctor, This is 100% of the people I know personally with PANDAS, who were misinformed!!!!!! Who else is not being given correct their results, and have Lyme??????

 

What the......???

 

OK my blood pressure is causing a squirt out my ears at this point....

 

We met with the Lyme doc on Wed and yes that result means Lyme!!!!! Those bands are specific to Lyme, but Lyme lives in tissue, not blood so unless you scoop out tissue, you may not see a lot in a blood test.

 

All I can say is, get your IGENEX test in your hands and if you have more than 2 either IND or + on the bands that are specific to Lyme, call a LYME doctor who is a Lyme Literate Medical Doctor recognized by ILads. We are using Dr. Sabovic and he meets those requirements and spends lots of time. I am pleased but will keep posting about his performance as we go on.

 

Sorry if this upsets anyone but the 4 PANDAS kids I know have a Lyme test that suggests Lyme and they were not given the result. They have not fully improved on IVIG MULTIPLE times. I imagine that doctors get paid a lot to give IVIG... I wonder.... our kids deserve the right treatment. And I am SOOOOOOO angry.

 

Nancy

Edited by Sheila Rogers
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So sorry, Nancy! And you have every right to be angry. I certainly would be.

 

For me, unfortunately, it just drives home the point again that we are only childrens' only true advocates and that, even with medicine and practitioners we want to trust, it remains "caviat emptor," buyer beware. Otherwise, too often, we're handed the easy answer, the quick answer, the familiar answer, the partial answer and therefore, sometimes, the wrong answer.

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sorry to hear this nancy!! although glad to hear that you may now be getting some answers.

 

yep -- long ago someone told me to be sure to always get test results in my hand for my records. those have been good words to live by. last year, i discovered the strep test that was to be sent out wasn't. sorry to hear your troubles!

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I dont know if this will make you feel better....

But..i was just getinng my head around in the ind band thing earlier this week per another panda mom....as i waited on the results..and i am no doc..

ds igenex was done in april 2010...and ran this past ALL the panda docs...was told it's not lymes by all...

NOw..per my results in the last 48 hours...i have recontacted most of the same docs...and i think there is a very recent, new awaking on how to read the results...and maybe to look at it a little closer....that is the gist i've picked up

and now that i know how to read...i think..what a maroon i was!!!!...but i was so fixated on pandas..i couldn't put time in trying to understand lymes too....i have 3 young children...one was absutely pandas(at the time, now all 3 are)...a husband...who travels....

there is no more time!!!!!

so now i will be head long into the lymes research if anymore can fit in my brain...

 

I definitely get your anger...there are so many reasons to be angry...

It all starts with the docs who roll their eyes at you when you notice the first correlation 7,8, 10 years ago and your own family members who think you are crazy for chasing all these avenues....."why don't you just listen to the doc(you mean the one who rolled thier eyes at me?!)"

 

I am on your side....and i hope that since are you are on this road a little ahead of me...that your children heal quickly and i will just follow in your footsteps...

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Nancy,

 

I don't want to pour fuel on your fire, you are upset and you are a mom who wants to get her two kids completely healthy; a noble and heartfelt fight.

 

I would just say perhaps you should take a breath and step back from this info for a moment. I'm just another mom piecing my kids info together as best I can, I'm not a scientist or doc, but I've always had a healthy sense of "does this smell right" and in reading your post I wonder if you are being given some misinformation and information that is being sold as a certainty when in reality it is not certain.

 

Regarding the IgeneX testing, In my experience with IgeneX, they do not bill insurance, at all, except Medicare. You must pay upfront and then they provide you with the documentation to submit to your insurance for possible reimbursement. The idea that they called a hospital to get your insurance info doesn't sound right. Perhaps when you could not pay, they had already run the test and sent the results by mistake might be what happened, but I would look up your benefits claims to see that your insurance actually paid them. I also do not understand why a copy of the results was sent to the hospital. Did a doctor from the hospital sign the IgeneX form or did the CT doc? When my dd had the IgeneX testing a couple months ago, the only results were sent to the ordering physician who signed the form, not me, nobody else.

 

As far as the results of the tests, it is not certain that IND are simply very weak positives; that is speculated by some, but not an established fact. Before the tomatoes start flying, I know a lot of what we are dealing with on this board and the Lyme board is not established fact, I get that. But before we go scaring a lot of new friends who haven't been around to watch the whole Lyme development evolve, some of us need to continue to speak up and say we don't know at this point if there is cross reactivity going on that is resulting in PANDAS/PITAND kids showing up IND on Lyme testing yet may or may not have Lyme. Nobody knows, not the folks at IgeneX, not the people on both boards posting like they know, not the LLMDs, not the PANDAS docs, nobody knows. All you can know is whether treatments are helping your kid and keep your eye on that ball.

 

I think your situation is unfortunate. I knew I would need to make a follow-up appointment to go over lab results and I have a copy of all results sent to me for the "binder." The mistakes in lab interpretation, correct reference ranges, results properly indicated as in or out of range, correct tests performed, ect., ect. are frequent from my experience. Right or wrong, it is up to us to continually apply the "smell test" and follow up on everything with every doctor. But you can't follow-up on what you didn't know had occurred, on what really shouldn't have occurred or did by mistake. In the end, you are doing the right thing by pursuing a lyme protocol as treatment of exclusion...you've tried everything else and it hasn't gotten your sons to where they should be and that is the bottom line.

 

JAG

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It is really hard for people who have not had a lot of experience with Lyme disease to believe how widespread it is and just how easy it is to have it. I am sure your kids will get better because you are good advocates for them and you do your research. We dealt with Lyme for over two years in our family and we are all healthy now. U can get well so dont be discouraged. A llmd is essential and I think the integrative ones have some extra tools in their toolbox sort of like DAN! Doctors do. We actually had a local integrative llmd and we also consulted w dr j in conn throughout the treatment I read cure unknown twice and that helped get me up to speed on Lyme. I read all the other Lyme books too but Pamela weintraub's is the best. The Insights into Lyme disease book by Connie strasheim is another important book. Lastly we could have done more detoxing and higher doses of probiotics and it might have shortened the duration of he treatment. Wendy and Elizabeth told me about their nutritionist who recommends up to 20 50 billion probiotics a day and lots of bentonite detox. We are following this plan now in hopes of preventing any relapse or other issues. It certainly can't hurt so you might want to consider these ideas. Good luck!

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It's normal to be angry, frustrated and exhausted by this journey, but is it productive to point those feelings at a specific doctor because they don't have the answers that nobody else has yet either? Test everything from the jump sounds easy, but what exactly is everything? Is it the same everything as it was 5 months ago (add lyme), how about 12 months ago (add myco-p), how about 6 months from now????

 

I took my dd to see a doctor others on this board have seen 11 months ago...he ordered a bunch of tests, the usual suspects...and there was a test in there called Factor V (Leiden) and she tested positive for one copy of the R506Q mutation. When I asked what does this mean? Why did you order this? He said it must have been a mistake, some other doctor must have ordered it. ???? Totally unrelated...... or maybe not? Maybe we can add this test to the list? (If the suspense is killing you, one copy increases ones risk of venous thrombosis 4 fold, two copies increases ones risk 50-100 fold.)

 

My point is this: we have a relative handful of doctors, including the llmds, who are willing to try and help our children outside of typical psychiatric medicine. Why do we try so hard to run them down? Yes you have to be smart, yes you have to be savvy, yes you have to be the tenacious energizer bunny. That is what has brought you and your kids this far and salute to all of you! You have to know more than you should. You have to know the questions to ask of professionals who you may know more than, yet they might talk down to you. When/if you get that call from a nurse reading off labs and she says "negative" you need to know to ask what was the specific measurement? What did each band say? IgG or IgM?

 

God chose you for your child and all that comes with the honor of being their parent. No doctor or teacher can ever come close to caring about them as much as you do.

Edited by Sheila Rogers
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I'm sorry!!! i was told my test (just LabCorp, not IgeNeX) was negative too, only to find out that only two bands were actually negative. All the rest were "non-reactive". This doctor said "You don't have Lyme, you've never had Lyme, I can't treat you." & promptly hung up. Gotta love Texas.

 

Where do you plan on going from here?! I'd write a letter giving that doctor a piece of my mind. Believe me, I have experience with negligent docs & fully plan on writing letters to them all once I'm better. But make sure not to be angry! As I'm sure you know, the average doctor is more experienced in the field of pride than in actual medicine & don't respond well to patients actually expressing doubt in them. At the same time though, if you call & don't get the explanation you're looking for (& I can hardly imagine one that would excuse this slip-up...) I'd recommend just wiping the slate clean & moving on! I'll be the first to say that most doctors just flatout suck, but you don't get anything accomplished by getting angry. Although you do have every right to, don't get me wrong.

 

Let us know what you find out/decide to do!

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It's normal to be angry, frustrated and exhausted by this journey, but is it productive to point those feelings at a specific doctor because they don't have the answers that nobody else has yet either? Test everything from the jump sounds easy, but what exactly is everything? Is it the same everything as it was 5 months ago (add lyme), how about 12 months ago (add myco-p), how about 6 months from now????

 

I took my dd to see a doctor others on this board have seen ...he ordered a bunch of tests, the usual suspects...and there was a test in there called Factor V (Leiden) and she tested positive for one copy of the R506Q mutation. When I asked what does this mean? Why did you order this? He said it must have been a mistake, some other doctor must have ordered it. ???? Totally unrelated...... or maybe not? Maybe we can add this test to the list? (If the suspense is killing you, one copy increases ones risk of venous thrombosis 4 fold, two copies increases ones risk 50-100 fold.)

 

My point is this: we have a relative handful of doctors, including the llmds, who are willing to try and help our children outside of typical psychiatric medicine. Why do we try so hard to run them down? Yes you have to be smart, yes you have to be savvy, yes you have to be the tenacious energizer bunny. That is what has brought you and your kids this far and salute to all of you! You have to know more than you should. You have to know the questions to ask of professionals who you may know more than, yet they might talk down to you. When/if you get that call from a nurse reading off labs and she says "negative" you need to know to ask what was the specific measurement? What did each band say? IgG or IgM?

 

God chose you for your child and all that comes with the honor of being their parent. No doctor or teacher can ever come close to caring about them as much as you do.

 

 

well stated

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I'm sorry you went through this. It is frustrating to have answers sitting on a desk somewhere. But I agree that before we throw the few docs treating PANDAS under the bus, we need to remember: most have only been treating PANDAS for 1 1/2 to 2 years, max. Most are not also lyme literate, but a few, not all by any stretch, are looking at lyme as an underlying factor when kids aren't improving from PANDAS treatment. One (Dr. Jones) perhaps the most experienced pediatrician treating lyme in the country, also advocates Ivig. Most do not. So there are differing opinions out there, and everyone is still learning, even the experts. Some of the best lyme docs have been sued - those folks doing the suing may someday wish that doc were there to treat themselves or their loved ones who become sick with lyme, PANDAS, or whatever. The docs we see for lyme and PANDAS are incredibly busy. I wait an hour or more to see them with my 9 year old. It is worth the wait - they care, they are trying to understand this disease, they are incredibly compassionate. They may make mistakes...but most of what they do is good. I am grateful they are there. The alternative, at least where I live, is so scary. I understand you are upset...but these are good people who want to help, and are overwhelmed by desperate, fragile families like ours. If we keep talking on forums, support groups, exchanging information, all of us will learn more, all of us will educate the docs as they educate us, and bring more children to healing. You are on the right path it seems, now, thank goodness. Keep us posted on how your kids fare, and Godspeed.

Edited by laure
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fcefxr (Nancy)-

 

First off - kudos to you for following up on this and continuing to seek help for your kids when things are not going well. I know what a tough cookie you are because I united with you this summer as a "low titer parent", and I laughed and laughed at your chopped up garden.

 

I've read this post a few times (and I had read the one on the lyme post prevousely) and I have a couple of thoughts.

 

I see the same doctor your saw and actually my son's igenex results were very similar to yours - the only positive for us was 41(which can be things other than lyme) and he had a couple of indeterminate in lyme-specific bands. My experience was a little different than yours, though.

 

I want to reply to your questions about whether the doctor didnt know how to read the test or why could he not call.

 

First - when the doctor gave me the prescription for the IGENEX test we set up a our next visit (actually it was a phone consult because we live far away)... with the understanding that we would be discussing the igenex test and other blood work at that time. I did contact the office a few days before to have copies of the labwork faxed to me so we could both look at it when we were talking. When we had our phone consult, the doctor opened my son's chart, looked over the results of all the blood work, and we talked about where to go from that point. (and I also did not have the right insurance at that time)

 

I am wondering ... since you did not plan to have the igenex test run... could it be that when the results reached the doctors office they were put in the chart by the staff (in anticipation of your next meeting) and the doctor never really looked at them because he did not realize they were there either? I am just wondering if NOT giving you the results was more of a clerical error, since the tests were run in such an unusual manner and neither he nor you knew they were going to be run... and I am wondering if the doctor actually saw the results and knew he did not have another appointment scheduled with you to go over them.

 

I think it would be very good if you could write a letter to the office manager and let her know about this. I am sure the office has had to make many changes over the past year with their procedures - given their growing PANDAS caseload- and it would benefit everyone if you would bring this to their attention so they can consider this when they make office policy.

 

 

Second - regarding the interpretation of the results as being negative for other parents- honestly, the doctor had a similar interpretation of mine. He acknowledge that it is possible that it is positive. It is also possible that a child with NO indeterminate or positive bands could actually be positive. He told me that I could see a lyme doctor or pursue IVIG and if IVIG did not go well then he would definitely recommend further lyme evaluation. We talked about it and then my husband and I decided what path we wanted to follow. Perhaps I had a different experience because I was looking at the results when we spoke. Again - I hope the parents who were told "negative" and then were not helped with IVIG take the time to write a letter to the doctor and express their concern. I do think that we are learning as we go along, and I don't think doctors are making the same recommendations today that they made even 6 months ago, so perhaps that is why my conversation with him was different.

 

 

I hope that you find healing with the lyme protocol and if you do I hope that you share that information with the PANDAS doc. In fact, I hope everyone who gets helped goes back and lets previous doctors know what worked.

 

Best wishes-

Edited by Sheila Rogers
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I sure understand the frustration as well as the confusion. We have an upcoming appt with the doctor you saw and I have found the front desk person to be helpful in some areas, but resistant in others... such as a list of labs he runs for PANDAS kids so our pediatrician can order them for her before we arrive to make the most of our appointment.

 

I have a question... is IVIg indicated for kids with Lyme and if not, is it contraindicated? If so, what negative signs might one see in their child?

 

My DD11 had her first IVIg around Christmas, after a battery of tests, including checking for Lyme in the spinal tap and I was told that was negative - I've already requested copies of all her labs. She woke the next morning and said that she felt better than she had in longer than she could remember - the severe episodes she was having pre-hospitalization also decreased in duration and severity. (She does have elevated LFT & urine porphoryns, so they are watching those - believe they are result of some meds she was taking that they D/C'd.

 

More recently, she is pale, her stomach hurts and she complains of nausea. Thanks!

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Not to hijack this thread but wanted to answer a few of your questions. 'hd'IVIG has not been typically indicated for Lyme. Recently it has been recommended for kids Lyme/PANDAS. Some children with Lyme have done well post hdIVIG treatment and some have not. It is not clear yet the cause. I've inquired with our LLMD (who does not use 'hd'IVIG) about why this is occurring and he felt its possible that its causing a cytokine strom = inflammation. You can have this occur with just antibiotic treatment as well with very sick individuals with Lyme. The herx from over treatment or hitting too hard consistently has been report to last as long as 15 months for some individuals. I 'suspect' it is those children that were unknowningly highly co-infected for Lyme, Babesia, Bartonella, Mycoplasma, Strep, etc that have just herxed way too much. Plus the low dose, potentially wrong antibiotic typically used for PANDAS treatment only kills the low hanging fruit and doesn't go at the core of the issue hence, relapsing effect.

 

I also wanted to mention spinal taps are widely known by LLMD to be an ineffective way of testing for Lyme.

 

-Wendy

Edited by SF Mom
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Thanks Wendy. Her spinal was actually done to check for meningitis, with Lyme added as an afterthought because they had enough to order that with the other tests. I'm trying to learn more about Lyme & Myco... will you please inbox me more info or tell me where I can find it? What is the most effective way to test for Lyme? Is it IGENEX? Thanks!!

 

Sorry Nancy... back to your thread.

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I inserted my replies within marked between ***:

 

Nancy,

 

I don't want to pour fuel on your fire, you are upset and you are a mom who wants to get her two kids completely healthy; a noble and heartfelt fight.

 

I would just say perhaps you should take a breath and step back from this info for a moment. I'm just another mom piecing my kids info together as best I can, I'm not a scientist or doc, but I've always had a healthy sense of "does this smell right" and in reading your post I wonder if you are being given some misinformation and information that is being sold as a certainty when in reality it is not certain.

 

Regarding the IgeneX testing, In my experience with IgeneX, they do not bill insurance, at all, except Medicare. You must pay upfront and then they provide you with the documentation to submit to your insurance for possible reimbursement. The idea that they called a hospital to get your insurance info doesn't sound right. Perhaps when you could not pay, they had already run the test and sent the results by mistake might be what happened, but I would look up your benefits claims to see that your insurance actually paid them. I also do not understand why a copy of the results was sent to the hospital. Did a doctor from the hospital sign the IgeneX form or did the CT doc? When my dd had the IgeneX testing a couple months ago, the only results were sent to the ordering physician who signed the form, not me, nobody else.

 

*** I called the hospital today to find out how this was paid. When the blood was drawn at our local hospital they submit it to Igenex, and attached our insurance info to the samples sent out. When I told Igenex that I didn't have the $800, they had access to our insurance info as the hospital included it when they sent the blood to them, as they didn't know Igenex requires up front pay, and amazingly it was paid. I'm sure they've struggled with getting paid from insurance companies so they publicly say cash only, but when faced with no money for it they indeed did submit to insurance, but I'm sure don't publicize it. Since the blood was drawn at the hospital and not a doctors office, the hospital had a record of it. Igenex DOES send a report to a hospital if they draw the blood. You've been misinformed if your doctor or Igenex told you that they didn't. A report was also sent to the CT doctor, the only doctor listed on the test form, who to this day, in spite of calls and emails, does not respond, even though I paid in full, in cash. I hope this smells right to you now.**** :-)

 

 

As far as the results of the tests, it is not certain that IND are simply very weak positives; that is speculated by some, but not an established fact. Before the tomatoes start flying, I know a lot of what we are dealing with on this board and the Lyme board is not established fact, I get that. But before we go scaring a lot of new friends who haven't been around to watch the whole Lyme development evolve, some of us need to continue to speak up and say we don't know at this point if there is cross reactivity going on that is resulting in PANDAS/PITAND kids showing up IND on Lyme testing yet may or may not have Lyme. Nobody knows, not the folks at IgeneX, not the people on both boards posting like they know, not the LLMDs, not the PANDAS docs, nobody knows. All you can know is whether treatments are helping your kid and keep your eye on that ball.

 

***** from the Igenex Lyme Testing report, and I quote,"Presence of only one double starred band or Indeterminate double starred bands in a negative report may indicate clinical significance." From another area of the report an explanation of the titers levels found:

<1:40 negative

1:40 Indeterminate

= or> 1:80 positive..... I take from that, as did our PANDAS pediatrician that IND is elevated higher than negative and as Igenex said above one starred band or IND starred band COULD indicate clinical significance. I believe I stated that if a IND (for indeterminate) was present on the 4 Lyme specific bands, this could be a mild positive. I didn't say this test said it was definite, I said it could be. These bands are specific to Lyme, our iLads/ LLMD says and according to others on these and other boards, as do their Lyme doctors. The Ilads/LLMD I saw said that IND or + on the double ** bands are specific to Lyme. Also a low CD 57 is present in Lyme as well as high C3d. I feel if, and agree with you that there could be some PANDAS overlap in test results with Lyme, so shouldn't a famous PANDAS doctor be aware of that? I can understand him not caring about my kids, because we are not "gravy train material."But my friends with good insurance were never told that IND COULD be significant. They were just signed up for another IVIG. The people that speculate, as you put it, that IND might be a weak positive are well known Lyme doctors who have often successfully treated people. No medicine is an exact science, and I didn't imply that it was, I just felt I should have been given my gosh darn test results and for my friends who have good insurance, they should have been told there was a Lyme possibility.... *******

 

I think your situation is unfortunate. I knew I would need to make a follow-up appointment to go over lab results and I have a copy of all results sent to me for the "binder." *****As do I*** The mistakes in lab interpretation, correct reference ranges, results properly indicated as in or out of range, correct tests performed, ect., ect. are frequent from my experience. Right or wrong, it is up to us to continually apply the "smell test" and follow up on everything with every doctor. But you can't follow-up on what you didn't know had occurred, on what really shouldn't have occurred or did by mistake. In the end, you are doing the right thing by pursuing a lyme protocol as treatment of exclusion...you've tried everything else and it hasn't gotten your sons to where they should be and that is the bottom line.

 

JAG

 

**** Posting does not show temperament or inflection. I mean none of this with anger to you Jag. As far as your comment regarding IND are simply very weak positives; that is speculated by some, but not an established fact. Is a PANDAS diagnosis commonly regarded as fact in the main stream medical community? Why then do we fight the fight to get treatment for our kids? Lyme testing at least HAS testing. So an IND shows at least something, like the Cunnigham test we are so thankful for. Most doctors regard it as questionable at best..We as parents know SOMETHING is indeed there and indeed wrong in spite of what is labeled "fact."I hope that new PANDAS parents take away from this, that they should learn what test results mean or imply, and never rely on any doctor to treat with the dedication that parents have for their children. Can an immunologist help? Possibly. Should it instead be a Lyme doctor? Who the heck knows? But at least know it's a very real option to the reason our kids can be so sick, and aren't getting better on a PANDAS only treatment plan. Do you have to question and check up on your doctor? You'd better believe it. And I'd love to throw those tomatoes BTW but it's a seven hour drive from our beautiful central Maine(grin)*****

Edited by fcefxer
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