High Dopamine Levels

[saidie10]

I found this on the PEPSI Refresh Facebook Page about Dr. Cunningham. When I read the last sentence it was like, "oh, that is why there is so much dopamine going on in my DS7's brain." Anyone else's PANDAS child have the high Dopamine levels? What treatment worked for your dear child if they have had treatment. Thanks for any input...

 

A quote from Dr. Cunningham:

 

"We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2. Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea. We also test for activation of CaM Kinase in neuronal cells in culture. Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain."- Dr.Madeleine Cunningham

 

Here is my DS7's Dopamine Levels. Kathy Alvarez with Dr. Cunningham's office told me that you double the mean, and if the patients score is more than double the mean then the result is considered very high. His Anti-Neuronal Antibody titer for DS2 was 16000. Normal Mean was 6000. Has anyone had the Neurotransmitter Test from NeuroScience? All but one of his Neurotransmitters was elevated and his Dopamine was 451.7 with the optimal range being 125-175 and the reference range being 48 to 435, so his was EXTREMELY elevated.

 

Just curios what others are seeing in their testing.

 

Thanks!

[peglem]

Yes, our antiD2 was 16,000 on the Cunningham test. Haven't had dopamine levels tested, though.

[trggirl]

Several of my daughter's Neurotransmitters were a bit high or a bit low, but the one that stood out was Norepinephrine. It was super high. Dopamine and Serotonin were just slightly low. I have always felt that the Neurotransmitter levels were a piece of the puzzle that doctors should look at.

 

Oh, and my daughter presents as mainly mild tics and excessive talking and ADHD. She does have some "stuckness" but it is not the main symptom.

[norcalmom]

Our results almost same as fcfxr. Only one out of range was anti-lysoganglioside (at 640..exact same as fxcfxr)

 

There is an old thread on this (2 months ago?) where alot of people poste their cunningham test results.

 

ds camK II was 176

 

We did draw when NOT in exacerbation.

[NancyD]

My daughter's D2 levels were also 16,000 and that was after doing IVIg for over a year. She was in remission at the time and not having any rages. I shudder to think what her levels would have been w/o IVIg. For years I have known her dopamine levels were elevated -- long before she was diagnosed with PANDAS. That is why Risperdal was the only psychotropic med to work and why SSRIs made her worse. I am also wondering if dyes (red and blue) can possibly affect dopamine levels, as she will rage after ingesting anything with dye in it.

 

Nancy

[rockytop]

Nancy

 

 

can you elaborate- or tell me where to go research myself- on the dopamine levels? I was interested as I read your post. I think our daughter's are very similarly affected by PANDAS and we tried mulitple SSRI's with disastrous results. Risperdal is the only thing that worked and did not cause SEVERE problems.

her cunningham test results included very increased lysoganglioside and dopamine 1 antibodies. I desperately want off the risperdal, however it seem sto work. I just woudl love to understand more of how it works.

Emily

[NancyD]

Emily,

 

There are many published studies that show overproduction or underproduction of dopamine can cause neuropsychiatric disorders and chronic diseases. Risperdal is a dopamine antagonist (meaning it blocks dopamine receptors). I believe it works on D2 receptors (anyone, please correct me if I am wrong).

 

If your daughter has high dopamine levels definitely stay away from SSRIs as they can cause manic episodes.

 

But, as you know, Risperdal and the other psychotropics are just bandaids. Sometimes you need a bandaid while you search for more long-term solutions. It took us nearly 10 years to find a better solution. I never thought we would be able to get my daughter off Risperdal but we did over a year ago -- about six months after starting IVIg.

 

Have you considered doing IVIg?

 

Also, as stress can increase dopamine and overproduction of dopamine can cause heightened anxiety, this becomes a vicious cycle. I try to minimize the level of stress in my daughter's life as best I can.

 

And, as indicated in previous posts, I eliminate all dyes and additives (particularly red and blue dyes)from my daughter's diet and stick with as much organic food as possible. All cleaning products are also organic. My guess is that dyes and additives (as well as toxins in the environment) may cross the BBB and cause dopamine levels to increase.

 

Nancy

 

Nancy

 

can you elaborate- or tell me where to go research myself- on the dopamine levels? I was interested as I read your post. I think our daughter's are very similarly affected by PANDAS and we tried mulitple SSRI's with disastrous results. Risperdal is the only thing that worked and did not cause SEVERE problems.

her cunningham test results included very increased lysoganglioside and dopamine 1 antibodies. I desperately want off the risperdal, however it seem sto work. I just woudl love to understand more of how it works.

Emily

[marilina]

yes

but we have anti D1 very very high

I understand that D1 receptors activate the action, while D2 receptors inhibit it.

D2 receptors are the same involved in Parkinson

but in fact the problem is always with too much dopamine in brain: for us when my daughter starts I call her "broken record"

I don't know if behavioral problems with the D1 or D2 is also very different, since in the first case the action is restarted continuously, repeated, and in the second case the person is blocked in the same movement .....

established the PANDAS'issues, we found in my dougheter a congenital immunodeficiency, an inability to properly respond to viruses, so we are using acyclovir due her inability to respond properly to infections.

simultaneously we use daily supplements (we are doing Yasko protocol(), and do not ever miss inositol and 5-htp, in addition to melatonin.

to "reeducate" the immune system we started about two months, the TSO (tricuris suis ova).