fightingmom

Really? Crap. I need to go do more reading then. I interpreted my reading that children often have low numbers and as they age they increase, so a low number at 5 would not be as worrisome. I guess I had it backwards?

I am trying to find something concrete, but from all the searching I have done, the only other thing I have seen mentioned that could possible cause low CD57 is HIV, but even that doesn't seem accurate, because it seems that HIV does cause a decrease in natural killer cells -- but not specifically CD57. I don't think CD57 could ever be diagnostic in of itself, but if you already have other positive indicators, symptoms, etc. for lyme and this comes back low, it's a good marker for chronic lyme. I have seen many references saying it's not reliable in children though and that their numbers tend to go higher as they age. So maybe don't be too worried about our son just yet?

Hang in there. Thinking of you.

Thank you. We are traveling to an LLMD on May 11th. It was the soonest anyone could get us in, certainly not the closest doc (14hours round trip) but we need to get the show on the road!

Hmm, makes you wonder if the strep is in the nose or something...maybe that would account for strep showing in labs, but presenting like allergies. Though, we too are dealing with high histamine, I really think it's more due to the methylation thing and don't believe we have true allergies. We are going through our 2nd round of allergy testing over the years and so far everything is negative for both of us, except I have an allergy to dust mites. Otherwise, nada. There is a big connection with inflammation/high histamine, neurotransmitters, etc. and it seems to all circle back to methylation. I need to really get this worked out. I'm working on protecting his gut, trying to keep inflammation at bay, addressing any vitamin deficiencies and going to test for the MTHFR and see how we can explore oxidative stress issues. I think unlocking this will be a big key. What order to address it in, seems to be the biggest conundrum. Hang in there, I feel your pain. And, as you mentioned in the other post, it is interesting we are seeing consistent patterns/cycles and more success with the zithromax.

Wow. Interesting indeed about the patterns and that we are both noticing improvement on the Zithromax. Let's keep tracking progress together. The cycling thing is very intriguing. I'm also not feeling like the augmentin is having any impact at this point.

I so badly want to go to this if the public is allowed...but my final in psychology is on Tuesday! So jealous. Please take notes if you go!!

Well, had a phone consult today and was told my husband had VERY high mycoplasma titers with active infection! He will be starting zithromax for 30 days... The PA suggested that this could very well be why my son responded so well to the zithromax. My husband is a carrier. What a jerk! In hindsight, we probably gave it to him. He just has a much better immune system!

Hang in there! Glad that things seems to be getting better. Hope the home infusions go well, too. Thanks for the tips.

My son does this and my husband says I twitch and "jerk" in my sleep all the time. I thought it was perfectly normal. LOL Hey, the dog does it!

You are awesome. Thank you!!

I have been sifting through some threads and haven't found it yet, but I'm learning a lot as I read the older threads, so that's good. Hmmm, Babesia, my son and I both had titers for both types of Babesia. Not high enough to be considered active, but I still maintain that if the body shoes antibodies, there must have been the exposure. We've never been treated and we both have wicked symptoms, so...if the shoe fits, right? Is Babesia the one that causes the rash with the little red dots? I have that, too.

Well, crap. I knew I should have kept my mouth shut....and I knew him waking with that headache was indicative. He's being really rude and grumpy and has some sort of rash coming out on his face, near his eye. He thinks he has poison ivy from being in the woods with friends a day or two ago, but I'm not so sure. I swear it seems that his behavior flairs every 2 weeks since on abx. The zith has definitely been the only thing to bring him to such a GREAT point, but there is a cycle forming here. It's about 2-3 weeks and the last 6 weeks it is almost at 2 weeks to the day. What the heck could that be?

Thank you!! I was hoping someone would respond. I am usually pretty good and finding sites and info. to interpret things but am having a hard time with this one. Your comparison is very helpful. ALSO, I am asking to check for staph/marcons at our LLMD appt. we have both been battling chronic sinus infections for, well, EVER. I just ended 14 days of Augmentin 2 days ago and I did not really feel relieved at all, but this morning I woke up with nasty frontal headache and sinus pressure. SO did my son, and he's in a bad mood today after 15 days of fantastic -- argh. None of the antibiotics seem to combat our sinus issues and we both tested negative for allergies in the past, and start more testing recently and so far that's all negative, too...so it's not allergies. Think I'll have CD57 done on my son, too. I know they say it may not be reliable for kids, but my son is 14, so...

Thanks, That's a good thought. Though, I'm so hesitant to try to drop it so quickly, he's been very sick for a very long time, I think it's going to take a lot more to get him well. This is the first relief we have had, and we have done psych meds, hospitals, etc. -- nothing else has worked till now.

I even did that for myself recently. Augmentin makes me sick!

I was going to say the same exact thing.

You may remember that a few weeks ago I posted that my son was raging and refusing to go to his Dr. appt that afternoon. We made it there, and he was started on Zithromax in addition to the Augmentin he was already taking. His labs also revealed he was very low in vit D so I started him on D3 that evening along with zinc. Since then, we have had 15 great days. He started to get a little grumpy around days 3/4 on the Zith, but we pushed through and I started doing some minor detox stuff (charcoal, etc). Yesterday morning he was a wee bit short with me and he woke up today with a nasty headache - so did I and my sinuses are KILLING ME. We seem to constantly have sinus infections in sync with one another, I sure hope this isn't the beginning of another. I finished my Augmentin 2 days ago...(nothing seems to work and I AM going to ask that we explore swabbing nose for staph and strep at next appt). With exception of maybe the sinus infection issue coming back and stirring up a wee bit, he seems to be holding strong with the Zithromax, but we were only given 14 days. I had a hard time getting Dr. to refill it. CVS had to fax a request to them 2x because front desk said they didn't get it, then I got a call from the nurse telling me my request to refill the Zith was DENIED - and by this time I had played tag for 2 days with the office staff we were now out of pills! I explained to the nurse about the significant improvement in my son's behavior on the zith (which I had conveyed a few times before to front desk). She was very nice and said the behavior info had not been conveyed to them and she didn't think it would be a problem now that she knew it significantly helped my son. They called in 14 more days (although she said she was going to try to get him to sign off on 30 so I didn't have to keep paying copays, which was her suggestion, I had not even thought of that). I get the feeling for some reason there is resistance to keep my son on the Zith - maybe it was just due to whatever was lost in translation between the front desk and the nurse, but I sure hope we won't have an issue because it seems to REALLY be helping! DS has come home from school the last few days saying that he is more active in class and he thinks his "teachers like him again because he's answering questions in class" -- and he told me that he doesn't even have the urge to SNEAK food anymore!!! And, you know what? He hasn't!! I have had left over pizza in the fridge and he didn't even touch one slice! He's been asking, "hey mom, can I eat the x,y,z" -- this is the same kid that had hoards of food in his room and wrappers under his bed, in drawers, closet, etc. In therapy for 2 years and the last 6+ months with an eating disorder specialist for binge eating! No one has been able to make a dent! And, in 2 weeks on zith he doesn't have the urge anymore? WOW! Just wow!! Amazing right?

My son doesn't have any tics with the exception of excessive blinking that comes and goes and sometimes disappears for months at a time. He also doesn't have classic OCD type symptoms. Though, if you live with him you notice OCD like behaviors and many of them had disappeared and been replaced with new behaviors. For instance, my son gets very upset if I change things. Most recently, he was upset that I bought a different brand of cat litter, and he got upset with me a few weeks ago for offering him a drink besides water with his breakfast. Yelled at me for always changing things. Often times when I would explain his behaviors to relatives I was shrugged off and told it was normal preteen/teen behavior, but I always knew it was more than that. His irritability had grown and eventually he started having rages. - punching things, door slamming off the hinges, tossing furniture in his room, etc. I think it really manifests in very different ways in many kids. The ADHD, handwriting, math issues, combined with some behavioral issues and bedwetting would sure make alarms go off for me. It's a hard thing to approach with another parent. Depends on how comfortable you are with her, I suppose. My son's aunt flat out said to me "You need to see a PANDAS doc!".

It's interesting to me that these IgG ranges are different fOr all of these kids. My sons total IgG was 705, based on the range you were given it would have been normal - low end but still normal. However, our range was like 842-2000 - - so he is pretty low! Different ranges for age or something I wonder? We also had low vit D, his was 17. Is this common amongst Lyme patients? I am trying to decipher what is pandas, what might by Lyme and what might be on the "I don't have a clue" list? Colleen, I don't think you are overly concerned. With kids as sick as ours, we can't leave any stone unturned. Follow your gut, I say

Hand and joint pain were one of my symptoms. I had others too though but I didn't even realize they were lyme symptoms until after much reading. I'd definitely consult with an LLMD if you think you may have lyme. I wake up with this many days. I almost feel as though my fingers are curled over like claw hands -- even though I'm holding them straight. It's very painful, but goes away soon after I wake up. I don't know what's causing it, I've had it for years.

Oh man, I wish I could. I have finals starting next week and need to study. Have fun!

These were done at labcorp, I saw someone on another forum said to do this test there. % CD8-/CD57+ Lymphs Result: 1 LOW -- Range (2-17) ABS.CD8-CD57+ Lymphs Result: 20 LOW -- Range (60-360) I haven't researched this too much, just know it's supposed to be suggestive of Lyme. Lyme doc said I could run this test if *I* needed more convincing of Lyme, even though during our call he seemed convinced based on my symptoms and Band 34 present on WB (not Igenex), high mycoplasma IgG and low antibodies to multiple co-infections. Anyone know a good site to reference what the CD57 is actually checking for?

Yes, because when I am seeking attention, I tend to hole myself up in the ladies room, too. I suppose my son wakes up multiple times in the night at 2-5am to pee hoping he will wake us for attention as well. I seriously have no patience for some of these doctors anymore!

They don't call the vagus nerve the "wanderer" for nothing. It really does impact SO much. Interesting theory SFMOM. Makes a lot of sense. I also have a lot of bladder issues but have blamed it on the endometriosis. Things that make you go "hmm". Thanks for that info! Additionally, I wonder if this attributes the "choking" feeling I often have. Like someone has their hands around my throat. It's not anxiety or anything like that. Comes out of no where. I'm merrily watching garbage TV, or reading a book and all of a sudden it feels like I'm being choked. Very strange.