Auto antibodies actually showed up.

[Guest]

I don't think the right tests were ever run on me, but Dr. Najjar ordered some labs and some of it came back abnormal and I still haven't received 2/3rd's of the results. All the local rheumatologists told me I had FM or CFS or depression but I have slowly declined, knowing I was dying, virtually bedridden.

So what showed up are the following:

Anti-dsDNA

Anti-GAD

and very abnormally high Cam Kinase II

 

I'm going to see my local neuro tomorrow but haven't heard from Dr. N yet. It's all very confusing for me because the dsDNA is clearly a lupus indicator and the others are neurological autoimmune indicators and the CKinase ocd / pandas. I'm wondering if I have neuro lupus? My brain scans PET and CT clearly showed inflammation / encephalitis but when I asked DR. C "when have you ever seen brain scans like this?" he responded: "in neuro lupus and neuro lyme".

 

Anyone else have any ideas? I know I should wait and hear from the doctors but I'm a mixtured of excited and terrified and stressed. Finally after 11 years something substantial shows up in my labs. Now I want a diagnosis and swift treatment started asap. We moved recently and I've been bedridden and very ill.

[PowPow]

Ophelia!!!!!!!

how did you finally get these results? When w ere they run?

I am so sincerely happy that you may finally get some answers, and some treatment.

can you go back to the AE alliance. Org website and do some searching there?

thank you for posting here to share with us.

[PowPow]

you deserve answers. I am so glad you did not give up.

[kakrpa]

Ophelia - very happy you have some answers and info! I didn't realize you suffer from OCD too - I saw that in your footer bio. I suffer from severe OCD (pure-O kind - constant worry/rumination). It's horrible. I've had many tests done but none of the ones you mention above, so I'll be curious to see if/what helps to explain OCD, etc.

[Guest]

Thanks @powpow, I was literally ready to die until these test results came back. I've been bedridden the past month, getting up here and there, but I feel like I'm dying. However, Dr. Najjar is quite possibly the busiest doctor in the world so I don't know how I'm going to get him to sit down, look over EVERYTHING and labs, then consult with my local neuro and give guidance.

 

@kakrpa I have horrific ocd. It came on suddenly for me. I've been through tons of therapy and my psychiatrist claims I've tried "every antidepressant available" and literally nothing helps. Mine is all in my mind too, has nothing to do with germs or checking, it's all tied around my bladder problems (very very severe fear and obsessions) and sleep and rest and magical thinking. I was also diagnosed with delusions because I could not separate my thoughts from the ocd and reality when it tells me things and pets and objects are evil. I will come back with an update if anything happens. In 12 years I've never had abnormal lab work, so I was ignored and pushed aside, I hope I am diagnosed and receive treatment, it's been A LOT of suffering. And I'm sorry you have it too, it's just awful. Has your doctor ordered the cunningham panel? Dr. N ordered that for me and I haven't gotten the results back though so that may offer more "clues".

[searching_for_help]

Ophelia - my dd and I are so excited to hear that you've finally found a doc that knows what to test for. We know how much you have suffered, but it sounds like you may soon be getting some treatment.

Hang in there, it sounds like you are in good hands with Dr. N.

 

Please keep us updated!

[kim]

ophelia,

 

I watched the video of Dr. Najjar and Susannah Cahalan last night on the AE all. site. Of the emotions that you're feeling, I hope you can hang onto excited. The way he kept questioning the physical symptoms instead of sweeping it into the psyc pile was so refreshing. I'm praying you have just as amazing of an out come as Susannah did.

[dasu]

Good to hear. Ive followed your posts and you have suffered through so much, with very little hope. You persevered, and now have something to act on.

 

From my perspective we are persevering through our kids symptoms now trying to figure out how to treat as the standard antibiotics/steroids/IVIG doesn't appear to be working and the standard non-Igenex lymes tests have come back negative. So I was piqued when you stated that you had a CT and that the cause was likely Lymes or Lupus. I did not know Lymes could do that. Is a CT then recommended for unresolvable neuro symptoms?

[Guest]

Actually I saw my local neuro yesterday and he said the auto-antibodies didn't matter, yet I see them as hugely significant so we were arguing a bit and I cried twice. He said, "you don't have lupus and you don't have stiff person syndrome so those auto-antibodies don't matter, treatment is all the same." But my diagnosis could change now, these are clues, pieces to the puzzle, and I was excited for something to come back abnormal and assist in accurate diagnosis. We've faxed all the labs to Dr. N but I haven't heard back from anyone even after leaving 5 voice messages. I know anti-dsDNA is lupus but anti-GAD indicates a host of different neuro autoimmune conditions including: neuro lupus AND autoimmune encephalitis. I like my local neuro but I don't think he understands the new labs, he admitted he didn't know why Dr. N had even ordered them. I can't go to duke either as they are just pediatric. I'm too ill and don't have the money to travel back to NYC, it's the worst place possible for someone as sick as me. So I don't know what to do. Things didn't go as I'd hoped yesterday. How can auto-antibodies not be hugely significant? These are clues!!! Dr. N did leave nyu, he's like head doctor chair doctor of another chain of hospitals, not to mention all the conferences, all the research, then trying to travel and treat patients, I think he would know what the labs mean but he's too dang busy.

[PowPow]

is he proposing any treatment?

GAD 67 or 65? was this from a spinal tap at NYU?

 

 

 

Did someone from NYU just call and give you results and then offer no explanation? I made acquaintance with a woman whose teen son has GAD antibodies and had purely psych symptoms- rage, psychosis, etc. He is being treated at a pediatric center for it. So, it is not solely SPS.

 

 

& I sent you a PM

Edited April 10, 2015 by powpow

[PansMom]

Hi Ophelia 22,

 

I am new to this forum and this is actually my first post. I am searching for more treatment options for my son right now (diagnosed with Pans/Lyme) about 2 1/2 years ago and made some initial improvements in the beginning but some set backs along the way.... Especially after getting Mono (EBV) in the fall which took him down for 2 months and was starting to recover and got some other virus and his ocd/tics came back with a vengeance along with some depression.... wanted to find out how things went after following up with Dr. Najjar.... We live out of state and considering contacting him. Any feedback would be greatly appreciated.

 

(I'm hoping this past year has brought you many answers and treatments options that are making you well again!)