Cunningham Results - 19 and Sick of Being Sick

[PianoGirl]

Hello everyone,

I'm 19 years old an have lived with an undiagnosed illness for eight years. Over the years, I've been given many different labels to describe the symptoms, but I've always felt that there was a deeper cause to explain them. Right now, the labels are OCD, Periodic Limb Movement Disorder, and suspected narcolepsy. My current symptoms are severe daytime sleepiness, fatigue, mild cataplexy, occasional hypnogogic hallucinations, multifocal myoclonus when I stop fidgeting, mental fog/concentration problems, intrusive thoughts, and recurring depression.

I've had every blood test imaginable, and they have always come back normal—until now. I had a Cunningham panel done in December with the following results:

Dopamine D1: 8000 (normal range: 500-2000)

Lysoganglioside: 320 (normal range: 80-320)

Tubulin: 4000 (normal range: 250-1000)

CaM Kinase II: 114 (normal range: 53-130)

They had a shortage of the reagent for D2, so I don’t have those results yet.

How do I interpret all of this? The report didn’t say anything. Also, blood work I had in March that tested for inflammatory markers came back normal. Unfortunately, none of the numerous doctors I've seen lately have known what to do about my numbers, and I don’t know what to do anymore, either.

After eight years, my symptoms continue to worsen, and I’ve had enough. I had no health issues until a sudden illness at eleven that started with extreme fatigue, which is very suspicious to me. I've been researching on my own, and from what I can decipher, elevated D1 antibodies (which I have) are associated with OCD, Narcolepsy, and PLMD. Can anyone confirm this? Have any of you with PANDAS diagnoses also had Narcolepsy or other sleep disorders?

Although I’m almost cured of OCD compulsions thanks to ERP and CBT, my other symptoms are debilitating, and I don’t want to be sick for the rest of my life. Do you know if any of the treatments for PANS or PANDAS can help with the fatigue and narcolepsy? And is there any point in antibiotics or IVIG after having this for so long, or is the damage to my brain likely permanent?

Any words of advice you have are very much welcome and appreciated. I know you’re not doctors, but I’d be curious to hear about any of your similar experiences and anything that has helped. Thanks!

[MaryAW]

My PANS daughter had a sleep test. She had mild sleep apnea; however, the doctor said that most PANS/PANDAS patients he had tested had narcolepsy.

 

It sounds like you need to see a PANS/PANDAS doctor. Where are you located? I think Dr. Murphy or someone from her group in florida is the best place to go. In the meantime, you can take omega 3's, vitamin D, and probiotics.

[Hopeny]

Have you had a Lyme and tick borne disease evaluation by a Lyme literate doctor? The symptoms you describe are common with Lyme and other TBds. You may want to take a look on ilads.org

[ktdommer]

PianoGirl:

19 is such a hard age to be sick. I applaud you for reaching out for help and understanding. I am a mother to a son your same age. He is sick of being sick also.

When you read the Cunningham panel report there should be a sort of bar graph under your results that goes from unlikely to likely. Yours may not have been filled in though if your testing isn't finished. My son was more elevated in all 4 areas you have reported. I agree with others that you need to see an expert.

My son is sick with Lyme disease and believe his trigger of PANS was Lyme and not strep. I agree that it may benefit you to explore this route properly if you haven't already. My son is treated for PANS by our ILADS doc. He sees PANS in many of his patients.

Any other health issues? What state are you in? Are you able to work or go to school?

I hope you find the answers.