So are we in the clear?

[Dedee]

We did the Igenex Lyme test on my middle son who has some residual PANDAS / PITAND symptoms after I found out he was IgG & IgM positive for myco p. I thought it might be possible that there was something else hiding as well. We got the results last week and the Dr. said he didn't think so. Said he thought it was just myco p. So I wanted to ask you guys since you really are the experts. Here are the results:

 

IgG:

30 +

39 Ind

41 +++

 

IgM:

31 Ind

41 Ind

 

So is it ok to cross that off my list? I really appreciate any and all opinions.

 

Dedee

Edited August 17, 2011 by Dedee

[LNN]

Here's the link for helpful threads:

http://www.latitudes.org/forums/index.php?showtopic=10804

 

where you'll find some links to articles interpreting the bands and interpreting clinical symptoms in kids. Not sure what sort of doctor interpreted your results - you will have to read the links, put it in context of your situation, and decide next steps.

 

Bands 31 and 39 are significant, but only you can decide how significant. As I recall, this is not your sickest child. So I realize you may only have a limited amount of energy and financial resources. If your doctor is willing to treat the myco p. for a reasonable period (whatever that is) you may see improvement regardless of what label you put on it. I suppose it may depend on what course of treatment your son follows.

 

If this were my son and I felt "something" were at play and other things had been ruled out, I would consider there results worth exploring. But again, it would depend on many things that you don't mention, such as how your son reacted to myco treatment, clinical symptoms, other things you've tried, etc. The lab results alone aren't enough to go on. JMO

[Dedee]

You are right, he isn't my worst child. Great memory! In fact he is my least symptomatic so he tends to be ignored. It is just that it has gone on for a while and he has just lingering issues although, as you say, not devestating. He has some OCD rituals, mostly at night. Night time anxiety. Absolutely over achiever in school.....has never made anything but A's on his report cards. Carries it too far though..expects only perfection. Anything scary will make him have OCD thoughts about it for weeks. He recognizes it, and deals with it well, but still, it's there.

 

The other thing which brought the whole thing up is that when they ran the immune pannel he is also immune dificient. He had low IgG and low subclass three levels. He has always been a sickly child. Has asthma and allergies. Usually gets the flu every year even if he gets the flu shot. The doctor says that made sense because his immune system probably cant mount an immune response to the vaccine. He is very small for his age, about a head shorter than most of his friends and very skinny. However, he is a very sweet boy who seems happy most of the time, but just catches most any illness that comes around.

 

He has been on Zith for the Myco P. for about 6 weeks and he says he feels better and doesn't have as many scary thoughts. Although he still sleeps on the floor next to my bed and seems very irritable to me. His asthma and allergies are horrible. So all that being said, any additional thoughts from anyone? We are seeing a regular physician who is known to be very knowledgable with PANDAS / PITANDS and Lyme. He sees several PANDAS kids in this area. He mentioned IVIG, but we we decided on supplements with continuing antibiotics for another month. So I am trying to decide how aggressive I should be with this child? Don't want to ignore him because he is the quiet one, but I don't want to over react either....Uggg.....Sometimes I feel like I am a paranoid mother and I know my friends probably think I make it up. I mean who has three kids that are that sick right? I really don't want to make this Lyme if it isn't, but I don't want to ignore it either. Help!

 

Dedee

[LNN]

The asthma, the allergies, the immunodeficiency - makes me wonder about mold (aren't you so glad you asked? Yes, another thing to worry about )

 

Start here: www.moldwarriors.com and http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

There is a genetic test you can do to measure the HLA gene that tells you whether you're more susceptible to mold toxins. It has to be done by Labcorp but is covered by insurance. You can also run C3a and c4a immune complexes - any commercial lab can run them and are covered by insurance. They can be suggestive of lyme and/or mold. General consensus is that if there's mold, it makes it very hard to recover from other illnesses. The mold needs to be addressed first.

 

Read your other post on Pandas - you have a lot going on. If it were me, I would delay any decision on lyme or IVIG until you look at the mold. It could be a factor for your DD as well. If your doctor is willing and blood draws don't require heroic acts of courage and physical restraint, maybe run the above labs to see if it's worth pursuing. In the meantime, practice ERP with DS. My whole family sounds crazy to outsiders when we talk about worry fairies and breathing in the "yellow" (feel good) thoughts. But hey, I'm out to get thru the day, not impress people with my normalness.

 

Dipping a toe into lymeland was quite scary for me. I mean no disrespect to any of my forum mates here. I say this somewhat tongue in cheek - but integrative medicine (in which I am huge believer) can take you to some very strange googling places. But what I've found is that minerals, vitamin imbalances, mold, metals, and bacterias all play a role in mental health. So take it one step at a time. But also consider "common threads". Mold would be something all your kids would be exposed to. So would other environmental issues. It's worth considering and is something that needs to be addressed before the other stuff or you don't see much progress. If the mold thing doesn't resonate, the other thing to ask is whether zith alone is the appropriate treatment for myco p. I'm not that familiar with it, but it may be a water pistol on the fire. Not sure.

[momaine]

I would be concerned based on his symptoms and those Igenex results. Also, wanted to mention that we believe my dd developed her allergies after she got lyme disease. (looking back) She also failed all those strep pneumonia titers which means, I believe, that she is selectively immune deficient. All this happened as a result of untreated lyme.

 

Lyme can really derail the immune system.

[MichaelTampa]

Well ... people who don't treat lyme day in day out miss the diagnosis all the time.

 

I would say, gee ... immune deficiency, neurological/psychiatric symptoms, combined with antibodies very specific to lyme (such as band 39) ... your son having lyme would certainly be the simplest explanation for all of that, for those who are inclined to look for the simplest explanation. How does this doc think your son ended up with immune deficiency, if not from lyme, would be a fair question. I do agree looking into mold and some more tests of that nature might be helpful.

[Dedee]

Well.....the doctor who read the lyme test is a LLMD. But the more I read the more I suspect there is a possibility that there could be something to this. His CD57 (think that is right) was low. I didn't know at the time that was an indicator or I would have said something. I know that the bands that read Ind could be positives because he is very immuno depressed presently. That bothers me. I don't know of any other LLMD's in this area. When I did the search, he was the only one that came up for our state. Guess I will wait till November when we go back and discuss it with him more. My son is still on Zith for one more month, then supposed to be off for a month before we go back to see how he does. That might give some answers in itself. Any ideas?

 

Dedee

[lfran]

I'm pretty sure that Igenex has a special add-on test to follow up on equivocal 31 and/0r 39 results. It is called an Epitope test (this is from memory -- I think it is test #488 and 489. They keep the blood for 3 months for possible follow-up, so you can have your doctor order these tests on same blood as original western blot. I would call them -- some of their phone reps know a lot more than others, so if you don't get good answers, keep calling until you do.

 

Well.....the doctor who read the lyme test is a LLMD. But the more I read the more I suspect there is a possibility that there could be something to this. His CD57 (think that is right) was low. I didn't know at the time that was an indicator or I would have said something. I know that the bands that read Ind could be positives because he is very immuno depressed presently. That bothers me. I don't know of any other LLMD's in this area. When I did the search, he was the only one that came up for our state. Guess I will wait till November when we go back and discuss it with him more. My son is still on Zith for one more month, then supposed to be off for a month before we go back to see how he does. That might give some answers in itself. Any ideas?

 

Dedee

Edited August 20, 2011 by lfran

[philamom]

My daughter's LLMD doesn't like the epitope test. Whe my dd first got a positive Igenex Western Blot & IFA result, I was worried about a cross-reactivity, so I ordered the epitope test (negative). Two months afterwards, we finally made it to an LLMD, who said he never runs the epitope test.

 

The 31 band could be significant. Did the LLMD run any other standard labs, including viruses. My daughter is IGG positive on a slew of other viruses which her llmd says is quite common in lyme folks.