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Very high dopamine d1 what does this mean on cunningham?

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Got results, talk to LLMD on Wed next week. My girl has high numbers and lots of neuropsych symptoms: depersonalization, derealization, environmental agnosia, ocd, intrusive thoughts, etc. AND along with lyme, babesia, erhlichia, anaplasma, bartonella, chlamydia pneumonia, high EBV and HHV-6, compound hetero MTHFR, psoriasis, hashimotos, POTS, MCAS basically MSIDS poster child!!!!


results without the d2 due to mfgr delay:


dopamine D1= 16,000 (range 500-2,000)


Lysoganglioside = 1,280 (range 80-320)


Tubulin = 2,000 (range 250-1,000)


CaM Kinase II = 131 (range 53-130)


She had not had any steroids OR IVIG prior to test. We did do one IVIG right after the panel was drawn- no big changes...


She has been on IV ABX for lyme, antimalarials, lots of support care including methylation. any input on test results?? we are doing Pharmesan Neurotransmitter test and NutrEval.


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My DS had 16,000 on D1 and D2 of the Cunningham. Dr. T, Dr. L and our local Neuro were all shocked at such high numbers. The reason the SSRIs and some other meds he's tried, as well as Vit D were such complete epic fails for him was clear with the results though, so one mystery solved.


He had PEX in Dec, had an unbelievably horrid reaction to it immediately, but since week 7 post he's been making baby steps of positive progress. He's in the best place mentally he's been in the 28 months of this nightmare. (small cheer)


2 IVIGs didn't seem to help him either that we could see, initial steroid burst at onset didn't seem to help, subsequent 3-4 bursts over first 8 months increased tics, mania, anger, depression,etc...similar to PEX.


This is a newer study published on D1 and D2 autoantibody levels correlated with SC. It's saying an imbalance in the dopaminergic system is more likely (duh!) causing greater sensitivity to Dopamine stimulus. Keep DD away from Vit D supps if she's taking any, see if you notice a change in her behavior.




DS has NMDA AE tests and HPHPA (OAT) labs cooking.....

Hang in there

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Our kids could be on he MSIDS poster together. People are clueless what all that simple diagnosis entails. My youngest is an MSIDSer big time.

Who did all the neuropsych testing or diagnosing? I am so frustrated because psychs and therapists don't name it. Also, do psych meds work at all for symptoms?

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My dd had high dopamine on a neurotransmitter test. I'm not clear on exactly what D1 and D2 are. Is that the same thing as high dopamine, or something else?


Found a pdf that might interest some of you. "Inhibition of dopamine conversion to norepinephrine by Clostidia metabolites appears to be a (the) major cause of autism, schizophrenia, and other neuropsychiatric disorders..." It's by William Shaw, Ph.D of The Great Plains Lab. It discusses HPHPA, elevated dopamine, clostridia, etc. I know our dd has high dopamine and low norepinephrine. Treating for clostridia, but just found out she has H. pylori as well. Actually, she ends up having most everything we test for. Ugh...



Edited by searching_for_help
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  • 7 months later...

DsMom said "This is a newer study published on D1 and D2 autoantibody levels correlated with SC. It's saying an imbalance in the dopaminergic system is more likely (duh!) causing greater sensitivity to Dopamine stimulus. Keep DD away from Vit D supps if she's taking any, see if you notice a change in her behavior."


Can somebody explain what the problem is with Vitamin D supplements? I know Dr. Murphy recommended aiming for a Vitamin D level of 50 at one of the IOCDF conferences.

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  • 2 weeks later...

As I have been educated Vit D causes uptick in Dopamine, something many PANS kids already have an excess of, like my DS14. His Cunninham was more than double the the median number for D1 and D2.


Vit D supps sent him over the top, really amped up all of his symptoms (aggression, anxiety, itching sensation, shorter temper, etc...). As I have mentioned in other posts he also was extremely sensitive to Omega 3's (flax and chia in food, fish oil) and they elicited reactions similar to the Vit D. so we have just tried to keep them away from him in any type of large amount.


He's doing so much better mentally I'm curious as to what his D1 and D2 numbers are today. Cunningham test has been out of those two so I haven't been able to check where his numbers are, but plan to in the near future as they are just able to test for them again. If they have reduced significanlty I will definately begin to slowly, in very small amounts, reintroduce.


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Do you have some information you can post on this vit d and dopamine concern? Are you certain? I am not trying to sound argumentative, but I am not sure that is accurate. Not saying your childs reaction to it did not happen- but the link between vit d and dopamine.

I had thought that (from a study on vit d and depression) vit d deficiency caused an increase in dopamine released.


Edited by powpow
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That's interesting to read. My DS had high D1 on the Cunningham, along with high tubulin and CamKII. He has taken 2000 IU of Vit D for several years, at the suggestion of Dr K. I have never correlated it to any behaviors (and he had a ton of them before taking D). Now, after lyme treatment, he is doing extremely well. Still on D.

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I'm no doctor, but after reviewing his Cunningham panel the Vit D reaction he had was suggested, I think by Dr T, as potentially like' too much gas flooding the carburetor'...Since his dopa was already off the scale.


This bit is from ei-resource.org, which Dr. T had posted a few years ago, but it makes sense when you think about it. Then again so much of my boys reactions were paradoxical, gosh it's hard to say. Quite a few other forum parents have posted thier kids neg reactions to Vit D and O3.


"The fat soluble vitamin D is confusingly named, as it is actually a powerful hormone. It has a major role in the conversion of the amino acids to neurotransmitters , tryptophan to serotonin, and tyrosine to dopamine and norepinephrine. It performs this role within the brain, and in the adrenal glands. Much of this is performed through vitamin D's close relationship with calcium, as calcium literally controls the communication between neurons (brain cells). This relationship with calcium is also why vitamin D is important for bone health. The neurotransmitters serotonin, dopamine, and norepinephrine have a huge impact on mood, so if vitamin D is deficient and they are not produced in sufficient amounts, the result is depression."


In my DS's case the abnormally high levels resulted in deep, dark depression as well...So while the Vit D doesn't directly cause an uptick in Dopa it indirectly impacts the increase in production, which in our case was not a positive. I know all our kids are unique, so we all have to try dif things and see what sticks and what doesn't.


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