Neurotransmitters Testing

[looneymom]

I got another test back on Tyler. Tyler's blood pressures are staying up much better since he started taking the NAC, Acetyl-L-Carnitine and B-12 shot. He was not able to stay on the Co Qu 10 because it kept the blood pressure too low. Tyler stills has the headache/scalp pain, tremors and hypersensitivity problems. He does not need a nap after 2 hours of school work and his moods are much better. This test was a urine test that was done thorough Pharmsan Labs. It is Panal 9031 ( NeuroSelect Profile) with Kynurenic Acid. I don't know for sure but some of these labs will do these test without a doctors order. We have ordered a few test for Tyler this way and were glad to get the results. I think I understand why the extended release clonidine is helping Tyler at night now. Here are the results.

Serotinon 144.5 Range 99-203

Gaba 2.7 Low 3.9-7.9

Taurine 330.8 156-535

Glycine 1963.8 High 441-1258

Glutamate 81.2 High 13.5-36.8

Histamine 53.3 High 10-32

PEA 63.5 29-83

Dopamine 198.0 High 106-191

Norepinephrine 87.5 High 28-51

Epinephrine 4.9 Low 7.1-13.6

Kynurenic Acid 22.1 High 10.6-19.7

I am still waiting on the results of one more test. It looks at the amino acid pathways. I'm still researching to figure out which of these may be causing some of Tyler's symptoms. Hope I'm getting closer to some answers. Can't wait to get the rest of the testing back.

Rachel

[Chaos]

Nice! Glad you are getting some answers finally and really glad he is finally getting some relief! Is your doctor helping you interpret these results at all or telling you what to do about trying to correct them?

[looneymom]

I am waiting on a call from the doctor to tell us what to do next. The tricky part is going to be keeping Tyler's blood pressure up. We've already tried supplements that were supposed to help but they kept his blood pressure too low and heart rate high. Our cardiologist is having to collaborate with the specialist so they can come up with a new treatment plan. More than likely Tyler will have a new treatment plan by the end of this month.

Rachel

[Katybug]

It is so interesting to see these test results. I don't know what they mean but I do know that a lot of the major players are out of whack. I so hope this is the info you needed to get Tyler feeling better!

[looneymom]

Hi Everyone,

I just wanted to bring you up to date on Tyler's testing. I got to talk to the doctor yesterday and I did get the rest of the testing results back. Our doctor is very concerned and having to rack his brain. He mentioned that he would be calling some other doctors for opinions. Tyler's blood work from LAbCorp was very interesting.

Chlamydia IgM and IgG negative

Parvovirus B IgG 4.7 High Range 0.0-0.8

Parvovirus B IgM Negative

Mycoplasma pneu. IgG 953 HIGH Range 0-99

Mycoplasma pneu IgM Negative

Cytomegalovirus IgG Negative

EBV VCA IgG Negative

Anti-Dnase B Strep Antibodies 390 High Range 0-170

HHB 6 IgG Antibodies 4.16 High Negative if <0.76

Herpes Simplex Virus I/II IgG Negative

Antistreptolysin 15.1 Range 0-200

The M. pneumonine IgG test has been ran two times before and has always showed in the normal range. So something has caused this to go up. As soon as I get Tyler rechecked for strep later this week, he will start on Bixan 500 mg twice a day. This has thrown the Texas doctor for a loop but he says that it needs to be treated. This antibotic will also take care of strep if it is still present.

The Genova NutraEval test is very worth the money. It gives a lot of information. Tyler was boarderline in these areas : Vitamin C. A-Liopic Acid, B2, B6, B12, Molybdenum, Zinc, and Vitamin D. Tyler was already getting 5,000 iu of D3, 50mg of Zinic, and 5000 of C plus a B Comlpex that has 100% of all B vitamins. This test also gives markers for malabsorption, Bacterial Dysbiosis,Yeast/Fungal, Carbohydrate Metabolosm, Energy Metabolism, Fatty Acid metabolism, Creatintine Concentration, Neurotransmitter metabolities, vitamin markers, Toxin & Detoxification markers, Tyrosine Metabolism, amino acids, Glycine/Serine metabolites, Diatary Peptide, Omega 3 Fatty acids, Omega 9 Fatty acids, Saturated Fatty acids, Omega 6 Fatty Acids, Monounsaturated Fats, Delta - 6 Desaturase Activity, Cardiovascular Risk, Oxidative Stress Markers, Elemental markers and vitamin markers. Tyler showed up low in just the vitamin markers but everything else was in range.

In the Neurotansmitter test that I posted above, the doctor is very concerned about the low Gaba, High Glutamate, High Histamine, High Norepinephrine and low epinephrine. BTW, he does understand that high norepinephrine will cause low blood pressure. He now understands why Tyler has to take 40 mg of Midodrine 3 times a day. He has never had a patient that has had low blood pressure. I told him Tyler could not take the Q co 10 because it kept his blood pressure to low. This supplement will interfere with blood pressure medication. The doctor wants to try to get Tyler Gaba up, so he has suggest that we try giving Tyler Gaba at night only. He is also hoping that this might help with the tremors. I have tried giving this to him during the daytime but he said to give it at night so it would not have to compete with any of the other supplements given during the day time. If it makes things worse, we are to stop giving it. If this works, his Norepinephrine should go down and Epinephrine should come up. So it's worth a shot to see if it helps.

We discussed the tremors and other sypmtoms. He is going to look for something natural before we have to go to a prescription for the tremors. He finally understands that this is holding Tyler back from not being able to stand or walk. I also sent him a picture of the rash on Tyler's face and arms. He is wondering if this could be MCAS and will be ordering a Bh4 test. Has anyone had this testing done? Is it a valid test to check for MCAS? Tyler is still having a headache with the severe scalp pain. Tyler says the headache and scalp pain is the worse symptom of all. So the doctor is looking at everything and seems willing to help. So maybe we are going to get some answers. IVIG treatment is still in the picture if Tyler's body will not respond to the antiobiotics.

Rachel

[gjensen]

Rachel, I am not sure what to make of it. It is interesting.

How can we test negative on one test and so high on another? What does that mean?

Could it be that the virus and mycoplasma is still a problem? If they are active and a problem, can something like IVIG be administered?

I wondered if Tyler would get further testing if Histamine levels came back high.

Rachel like always, I admire your persistence. You are a great mother. We continue to pray for Tyler.

[looneymom]

Hi Gjensen,

There is more testing to do. I have to call the doctor's office back tomorrow to find a LabCorp Lab in the state of Oklahoma. Hopefully, there is one in Tulsa. This doctor is going to do some more digging. He is very concerned about all this. He would rather try natural supplements first if possible but he realizes that Tyler has been sick for a very long time. IVIG is not out of the question. His Histamine levels were high on the nerotrannsmitter testing. He asked if we ate out much because MSG with cause high Glutamate and histamine levels. Eating out is a luxury maybe once every 3 months. So the doctor is a little puzzled by all the results.

Rachel

[Katybug]

Hi Rachel,

I was reading about parvovirus b in humans. The CDC info states that there is a tell-tale face rash associated with this virus. I wonder if that is the rash you are seeing on Tyler's face?

Also, since your doc is willing to call other docs for opinions, I wonder if Dr. Afrin in SC is worth a call. He's a mast cell expert and a hematologist so maybe he would have some insight into what all these results mean.

Just thinking out loud... Always wishing the best for Tyler.

Katie

[sue1234]

I had a high glycine when I had blood amino acids done a couple of years ago. Any idea what high glycine means?

Interesting on the parvovirus...I'm going to have to go read on that. I was aware dogs got parvo, but not familiar with human's version.

[looneymom]

Hi Sue

From what I am reading, high glycine is a good thing. It helps keep depression at bay. It also prevents some of the severe neurophysic symptoms. So in a way I'm thankful it's this high.. In kids or adults that have severe OCD, PANS/PANDAS symptoms this is very low in their system.

I have started giving Tyler the GABA 750 at night but this morning his blood pressures were much lower. So I will have to monitor this closely. I may have to cut down on the dosage. The doctor said this would be the best way to get his GABA up.

Tyler goes to the doctor on Friday to be rechecked for strep. Then he will start the 500mg Bixan twice a day. The Bixan will supposedly get any strep left and will work on the Mycoplasma antibodies load. This load should not be this high. This doctor has ordered some more testing again through LabCorp.

Rachel

[sue1234]

I can believe that glycine keeps depression at bay. I've mentioned a few times on this forum that I am inappropriately in good spirits. I guess my high glycine keeps that going!

Please keep us updated, especially what the new tests will be.

[looneymom]

Here is the lastest test results on my son.

Rachel

[JuneFlower]

Not sure how old your son is. But have they ruled out shingles? It often appears on face and scalp. It unusual in young children but not impossible .

June

[looneymom]

Hi June,

I have also wondered about this. I described what I was seeing to the doctor and sent him some pictures through email. He seems to think it may have something to do with Mass Cell Activation Disease. He said he would be talking to some other doctors about my son's condition. I'm hoping he talks to Dr. Afrin.

Rachel

[JuneFlower]

Well all I know is dermatological stuff is real hard for even a specialist to diagnose sometimes. Usually they can do a culture to check for certain things. Good luck. I hope he feels better.

June

[looneymom]

I have found a possible connection to why my son's Glutamate may be so high in his brain. At the end of October last year, the Cunningham panel was ran again on my son. My son's CaM Kinese was highly elevated. I will be sending this article on to our doctor in Texas. If this is part of the problem, it would indeed cause nerve pain. I just hope this is reversable. Here is the article.

http://www.jbc.org/content/287/11/8495.full

I did take Tyler to the doctor last Friday to check strep. Rapid strep test was negative but waiting on culture. Tyler has started taking 500 mg of Bixan twice a day. If we do not see any improvements within 2 months, Tyler will be moved on to something different.

Tyler is going to be starting a new supplement called True Calm. It helps with sleep and should help raise up GABA levels. As long as Tyler stays on the low end of GABA 200mg, it does not seem to affect his blood pressue. This supplement only has 200mg of GABA but also has a few other things to help raise GABA and lower CaM Kinese.

Rachel

[Suthrngal]

Looney mom I have had all the tests you mention for Tyler. Wow! We're fighting aren't we? My GABA is low and glutamate very high on nutraeval and neurotransmitter test. When all symptoms started I became highly allergic to MSG. Let me know how the GABA is working. I have tremor too suddenly.

Also I am floored a neurologist tested for all the quest tests above! Yay! So did the biaxin work???? Praying for you as you battle for your baby!

[Suthrngal]

Ps the article you posted above...what's the skinny. What did you find? I don't have it in me to read the article. Thanks!

[looneymom]

The Bixan is keeping Tyler's blood pressures up. Tyler was not able to use the GABA during the daytime because it made him too sleepy. However, he uses a product called True Calm at night and it has GABA and Taurine in it. It does help with sleep because I have started taking it on nights when I could not fall asleep. It does relax the brain.

Taurine will also help raise GABA levels and help balance electolyte levels. However I have not seen it help with his tremors but Tyler is going to continue using the Taurine at a low dosage. I have been reading a book called Healing Lyme Coinfections by Stephen Buhner. I have learned that a defiencey in Choline can cause tremors. Choline is a non essential vitamin but is usually found in the B-Complex Vitamin.

[Suthrngal]

Thank you!!!

[Suthrngal]

I am told I am a choline drainer via 23andme...but never took. How much does Bruner recommend?