Cytokines and the blood brain barrier

[philamom]

It's omsusa.org

Edited January 9, 2012 by philamom

[sptcmom]

Rjayne--Your post has brought up more questions then answers -- but THANK YOU for posting.

 

The possible connection between OMS and PANS is so interesting.

 

I was fascinated to read that a neuroblastoma tumor is not necessary for this diagnosis--and in fact this AUTOIMMUNE reaction can be caused by a virus.

 

OMS (the virus caused type, with no tumor present) LOOKS like Ps, including:

references to emotional issues

possible explosive rage and personality changes

tremor issues (many Ps children have chorea-like movements, etc.)

learning decline, focus problems

fine motor issues (writing being most evident)

can be repetitively triggered by a virus

may result in the child being mute, immobile, and have eating issues!!!

if you look at the blood work suggested by the leading expert on this childhood illness it looks like a PANDAS/PITAND list.

 

GOOD HEAVENS...and typical treatments include: steroids, IVIG, and at times, plasmapheresis...(WHAT the heck are we dealing with here...)

(I only wonder why the doctors we carried our d to originally didn't suggest a lumbar puncture to check for spinal infections.)

 

Dr. Pranzatelli looks like an absolute genius -- who cares deeply and has obviously devoted his career to help. His website is full of information which is incredibly parallel to PANDAS (or more likely PITAND)

 

www.omsusa.org

 

The interconnections are so interesting. Nagalase is a toxic substance produced by viruses (opportunistic infections that never leave) as per current info. Patients with tumors have high Nagalase as do patients with chronic autoimmune and neuro degenerative diseases. Tumors have been studied in depth by Dr. Yamamoto in his Philadelphia studies and he can be Googled easily. But thats where he has researched GcMAF and achieved phenomenal remission even cures of his patients. Ruggiero another scientist is currently working on GCMAF probiotic, MAF 314 I believe. It might even be out in Europe. Yahoo Autism and Neuro kids groups and Lymenets across the world are discussing these current therapies and even trying them out. Check all this out- its cutting edge and there are so many parents doing it.

There are theories and symptomatic relief treatments while the theories are being further researched.

Then there is a practical approach to things which is still experimental with GcMAF shots, checking the Nagalase levels and bringing those levels down to achieve tumor regression. The very affluent are doing the stem cells in Ukraine or New Delhi. There are only 2 or 3 docs in the US who understand the impact of Nagalase, viruses, tumors, chronic degenerative diseases, PANDAS, Lyme and co. My experience with learning with two of these docs has been mindblowing.Infact several patients of this famous LLMD in California and another one in Seattle have already travelled and successfully FULLY recovered after Stem cells at the New Delhi facility. The famous LLMD in Georgia is now trying to work things out with Ukraine as the more economical options.

Edited January 10, 2012 by sptcmom

[rjayne]

Rjayne--Your post has brought up more questions then answers -- but THANK YOU for posting.

 

The possible connection between OMS and PANS is so interesting.

 

I was fascinated to read that a neuroblastoma tumor is not necessary for this diagnosis--and in fact this AUTOIMMUNE reaction can be caused by a virus.

 

OMS (the virus caused type, with no tumor present) LOOKS like Ps, including:

references to emotional issues

possible explosive rage and personality changes

tremor issues (many Ps children have chorea-like movements, etc.)

learning decline, focus problems

fine motor issues (writing being most evident)

can be repetitively triggered by a virus

may result in the child being mute, immobile, and have eating issues!!!

if you look at the blood work suggested by the leading expert on this childhood illness it looks like a PANDAS/PITAND list.

 

GOOD HEAVENS...and typical treatments include: steroids, IVIG, and at times, plasmapheresis...(WHAT the heck are we dealing with here...)

(I only wonder why the doctors we carried our d to originally didn't suggest a lumbar puncture to check for spinal infections.)

 

Dr. Pranzatelli looks like an absolute genius -- who cares deeply and has obviously devoted his career to help. His website is full of information which is incredibly parallel to PANDAS (or more likely PITAND)

 

www.omsusa.org

Because OMS affects one in ten million, there is very little info out there, really nothing but what Pranzatelli has published. In the past I have heavily relied on Dr. T's list of behavior symptoms in PANDAS to present to schools, or whoever else needed proof that her behaviors are a direct medical disease. What is interesting is that children with OMS suffer from virtually every symptom of PANDAS to one degree or another and in addition, have the extreme physical symptoms. Baffling that physical symptoms are what drive extreme medical intervention,crippling psychiatric symptoms aren't enough?!

Has Dr. T or any of your leading research Dr's done spinal taps of children to look for t cell expansion in the csf? It is my understanding that PANDAS is thought to be a t cell driven autoimmune disease. In doing a spinal tap, they would not be looking for the virus itself , but evidence of a large population of specific lyphocytes being where they shouldn't be.

I would like to thank you all for posting your experiences with extreme behavior. I have read through many posts about exorcist like behavior and how parents feel as though disease truly runs their lives and homes and I can totally relate.

[rjayne]

I'm lost though, how can your daughters immune system be causing these symptoms if she is on immunosuppressive drugs? Don't they in fact suppress the bad reaction? And taking her off of them in a flare, wouldn't that only cause the symptoms to get worse?

There was a time when there was a direct correlation between symptom reduction and treatment. In the past year or so it has become less clear as to whether or not treatment is helping. It could be that a "normal" population of b cells cause problems for my daughter as a result of bbb permeability. B cells begin to regenerate about 3 months after treatment. We can only treat with chemotherapy every 6 months, at the most. Her symptoms at this point may also be caused by permanent brain injury from years of attack. We will not know what is really going on until we end all immunosuppression and see what happens. If she stays the same, then we'll be stuck with brain injury. If she worsens, we'll have to return to some form of immunosuppression. Does that make sense? It's totally confusing I know.

 

 

even when you "reset" the immune system the b cells come back??

B and t cells will re-generate within a certain amount of time post-treatment. Many children with OMS achieve remission with rituxan leading us to believe either their b cells were "reset" OR the inflammation which caused bbb permeability has subsided and b cells potentially carrying the same defective message can't make it in. We've had six rounds of the stuff and it doesn't appear that rituxan has "reset" the B's.

[braintrainer]

Rebecca and group

 

Hi. I am brand new .. I filled in my profile so you can read about me and my daughter, Shannon now 14 y/o.

 

I finally joined this board to start researching about OMS and PANDAS connection. I know Shannon was tested for PANDAS at SLOAN NYC when being treated for OMS in 2008 and it was negative. Are you supposed to be tested a certain way for PANDAS and is the test ever in need of 2nd opinion??

 

Also, can anyone recommend a PANDAS specialist in NJ that I may be able to connect with for Shannon and possible overlap of treatments for OMS and PANDAS relative to chronic neuroinflammation?

 

Thanks .... Colleen

 

 

My daughter has a rare neurological/neuropsychiatric autoimmune disease called opsoclonus myoclonus syndrome ( OMS) that is very similar in symptoms and underlying cause as PANDAS. We have done years of steroids, years of monthly ivig, and 7 rounds of chemotherapy in attempt to "deplete and reset" the immune system. Despite treatment, my daughter still suffers from extreme behavioral issues (especially before illness and if there is an infection present) cognitive issues, and intention tremor. In retrospect, the treatments (though they do help many) have been nothing but a band aid. I personally believe that cytokines and chronic inflammation leading to blood brain barrier permeability are responsible for allowing the immune system access to the brain and for the ongoing assault.

My questions to you all are: are cytokines being investigated in PANDAS research? I've done some googling, but haven't found any leads. Is permeability of the bbb considered the big problem as opposed to the defective anti-bodies themselves? Outside of ibuprofen and steroids, have any of you had any luck reducing cytokines activity/ bbb permeability. Do you find your kids suffer from flares when they have an infection or illness outside of strep?

Thank you!

Rebecca

[twoplusone]

Neuroprotek is a supplement aimed at reducing cytokines and addressing BBB permeability.