Christianmom

I was checking into PCR testing for mycoplasma pneumoniae through the UNEVX lab as suggested by Garth Nicholson (on his website under "frequently asked questions"). The test is very expensive--about $400, but I think only $250 if you just check for mycoplasma pneumoniae and not the other types of mycoplasma (I believe the LabCorp mycoplasma test is only checking for mycoplasma pneumoniae). I am only considering it because my son has a positive IgG but negative IgM on the LabCorp test. Anyway, I was wondering if anyone has done this test through them. They claim it is DEFINITIVE evidence of an active mycoplasma infection--no false positive or negatives with this test. Anyone have any thoughts on this? I have already spoken with Garth Nicholson and realize that a positive IgG can point to chronic mycoplasma even without a positive IgM. I was just wondering who might have gone the extra step to have this test run. And did you feel it was worth it? Thank you.

This is just my opinion, but I think it is a legal issue which some doctors take seriously and others don't. I have had doctor's order labs without seeing my son and others that wouldn't even consider it, saying it was illegal. Perhaps too, different states have different laws. I think you may find that your doctor won't budge on this. He will probably prescribe antibiotics without seeming the bloodwork though--at least a short course until the bloodwork is back. Also, you can can call every day or so, asking if they have a cancellation.

Bumping this back up as I changed my post. Thank you.

Just got my son's "amino acid profile" results back. Everything was normal except his Tryptophan was high. Here are some of the more interesting results: Glutamic acid, P1------------33.9 (reference range 22-190) Glutamine, P1----------------603.6 (reference range 320-700) Tryptophan, P1---------------114.5 (reference range 15-109) HIGH Histidine, P1---------------------73.1 (reference range 46-125) 3-methyl-histidine, P1---------3.8 (reference range 0-10) 1-methyl-histidine, P1---------3.3 (reference range 0-21) Does anyone know if these numbers are telling me anything about my son's glutamate or histamine levels? And tryptophan--isn't it normally low in someone with OCD? I would appreciate anyone's comments.

Just got my son's "amino acid profile" results back. Everything was normal except his Tryptophan was high. Here are some of the more interesting results: Glutamic acid, P1------------33.9 (reference range 22-190) Glutamine, P1----------------603.6 (reference range 320-700) Tryptophan, P1---------------114.5 (reference range 15-109) HIGH Histidine, P1---------------------73.1 (reference range 46-125) 3-methyl-histidine, P1---------3.8 (reference range 0-10) 1-methyl-histidine, P1---------3.3 (reference range 0-21) Does anyone know if these numbers are telling me anything about my son's glutamate or histamine levels? And tryptophan--isn't it normally low in someone with OCD? I would appreciate anyone's comments. MomWithOCDSON, isn't glutamic acid basically glutamate? So, therefore, my son's glutamate is low normal and he does not have a problem with glutamate? Would that explain why the augmentin xr didn't help him since it is a glutatmate modulator (lowers glutamate)?

Here is a map of the Coram locations: http://www.coramhc.com/Map/

Dr. Rosario Trifiletti: Here's the link: http://www.site.neurokidsr.us/ His e-mail and phone number are at the bottom of the page.

Are you not continuing to get relief with the homeopathy (or at least not 100%)? What does your homeopath think about that?

I would e-mail Dr. T (e-mail address is on his website) and PUT AN URGENT FLAG ON IT. Or you could call his office, but in my experience e-mail is faster. He'll get you in as soon as he possibly can--probably today or tomorrow. And I don't think he will be offended at all if you then switch to Dr. B. Just hate that you would have to spend the money twice, but if it's an emergency, you might have to.

JuliaFaith -- Did you have your son's methylmalonic acid levels checked? Just wondering as my son's were normal, but I thought on the low side (91 -- (reference range 73-376)). Naturopath feels my son doesn't need B-12 shots, and he does already get B-12 as part of KPU supplement. But part of me says give B-12 shots anyway as it can't hurt (can you tell I'm desperate ).

lyme mom--thank you for your detailed response with many things to consider. We will soon be running a hair test as well as food allergies tests. Hopefully they will give useful information. Sixteen is a hard age to be sick. But it's actully harder on his dad and me. He's really an amazing child.

My son weighs 120 lbs., so I guess the dose is right. Do you take it twice a day? My son does (two 1000 mg. pills, twice a day). I read that a split dose gives more absorption and can therefore cause more herxing. For detox, we are only doing extra water and high dose vitamin C (3000 mg., but I may increase to bowel tolerance), and curcumin. Probably should look more into this, and I will if symptoms remain. My son also takes ImmunoProbio probiotic (2 per day), enzymes, D-3, Nutrient 950 and Total Omega for KPU, carcinocin (homeopathic remedy) His herxing isn't that bad. Just hard to watch because herxing for him means increased OCD. It's hard to watch him go backwards.

My son started doxycycline last Tuesday night and had began "herxing" Thursday morning. Does anyone have any thoughts concerning how long the "herx" might last before we see improvement? I was also wondering if 400 mg. is the normal dosage. It seemed a little high to me. My son is 16.

Do you know whether doing PEX by IV is questionable in terms of whether the vein collapses? In other words, do kids usually make it through the procedure successfully by IV only. What happens if the vein collapses? Or is that not really something to worry about? Sorry dcmom. Should have read the entire thread before posting. My question was already answered.

Thank you, I think I will continue on the schedule I have and keep the doxy. with at least some food. It's not worth the stomach upset. That is one thing he has never had trouble with, and I would hate if that started.

My son has just started doxcycline 400 mg./day. I have read that it is less effective if given with a full meal (snack or small meal OK) or with vitamins. I have been trying to give it this way: Breakfast at 8:00 Doxy. at 9:00 Vitamins with lunch Probiotics between lunch and dinner Vitamins with dinner Doxy at 9 pm with a snack Does this sound OK? My question is about the 9:00 doxy. Is it OK that it is being given an hour after breakfast (and often a large breakfast)? Thank you!

Hi saidie10, This test is usually not ordered by PANDAS doctors. A lyme doctor ordered mine. I did ask Dr. T about my son's results, however, and he said he did not feel the test was not absolutely a marker for lyme (though keep in mind, he is not a lyme doctor). I also think I have read that it is not a trusted marker for children, though I can't remember where. My son is 16, so he is considered an adult.

Hi Cab40, I sent you a PM. You can retrieve it from the upper righthand corner of your screen. I thought it best to answer your questions that way so as not to go off topic with this thread. Thanks

Hi cab40, My son had previously tested negative for mycoplasma but recently tested positive. Dr. T ordered the tests and the doxycycline. My son has no symptoms of mycoplasma, but he also had no symptoms of strep (only high titers). My son's only symptom of any illness seems to be OCD. It seems to be his body's way of telling him he is ill. Dr. T is VERY busy to say the least. It is almost impossible to get any response from him unless it is an emergency. If you want to talk with him, you will have to make a phone consult. He charges about $100/15 min., so obviously you don't call too often. And I try to be very organized (always have my son's labs right in front of me). It keeps the calls shorter and therefore saves me money. Labwork is always an ordeal with him as well because he has such little office help. So basically when he orders tests for me, I always have the hospital send a copy to my son's primary care physician. I then go pick them up myself. I then scan the labs and e-mail them to him, so he has them in his computer and doesn't have to chase a fax. I usually re-email recent labs just before a phone consult as well as include a brief summary of the questions I have and the medications my son's been on. This as well helps keep the calls short and focused. You many not want to deal with him because of these oddities. But the distance is not a problem. He is very, very comfortable (and so am I) with phone consults. He is very personable and you will feel in many ways as if he is right there. I live three hours from him.

Thank you. I will.

Dr. T recently changed my son's antibiotic to doxycycline to treat mycoplasma. I have been researching this drug and found this post. It made me think of this thread. The post is about using doxycycline to treat depression (or could we substitute the word "OCD" for the word "depression"). http://www.dr-bob.org/babble/20090104/msgs/872561.html

Have your boys ever had lyme testing done? It may be worth it with the low CD57 scores. Not sure what labs to suggest. I'm sure others will post. My son's CD-57 is 100, which is lower than I would like it to be. He is PANDAS with questionable lyme. I wouldn't rule out mycoplasma either as it took my son a VERY long time to show titers for mycoplasma (a year on antibiotics). Dr. T explained it like this--when one thing leaves like strep, another infection often rears its head. It took a year for my son's anti-Dnase B to start coming down, but now his mycoplasma is high (had always been normal before). Interestingly, when our family was checked for mycoplasma about 6 months ago, ALL our titers were high, though my son's were normal. I would suppose he's had mycoplasma all along, just wasn't showing titers.

Is fecal pH the same as saliva pH. My son's fecal pH (through the Metametrix stool test) was 5.9 (range 5.7-7.1). Would he be acidic/alkaline or normal?

Through Dr. T's account with Metametrix I paid $395, which is the same price you can get it for without a doctor as S & S posted. The only advantage for me is that we have met our out-of-network deductible, so I'm hoping to get some back. I don't think the insurance companies will reimburse for something not ordered by a doctor. I'm not real hopeful insurance will pay though as it is a stool test. I have never tried to get a stool test reimbursed before. And I will probably only get half back even if they do approve it. That said, the information it gave was very helpful, and I felt the money was well spent.

I have been reading on the internet about MSG as my son seems to react to it. I read this and was curious what others thought. My son has KPU/pyroluria and is on B-6/zinc supplements. The quote is in response to a questions about what to do if you think you have problems with MSG. http://www.ehow.com/how_2282372_diagnose-msg-alergy.html "Supplement your diet with vitamin B6. If your symptoms, after eating foods containing MSG, disappear or are less intense when you begin the vitamin regiment, you may be experiencing a reaction to MSG as a side effect of a vitamin B6 deficiency. Researchers found that more than 80 percent of test subjects quit reacting to MSG after taking 50 mg of vitamin B6 for 12 weeks." This is really interesting to me as before PANDAS a year ago, I don't recall my son ever having problems with MSG. So did the KPU (whether caused by infection or was something he was born with that was set off by adoscence) cause my son's current MSG problems? And can I have hopes it will go away as we treat KPU? What has been your experience?