New disease attacks young women causing them to go catatonic...

http://philadelphia.cbslocal.com/2013/02/07/health-mysterious-disease-discovered-locally-strikes-mainly-young-women/

Coincidentally, I am just returning from Duke University where my teen daughter was being diagnosed and treated with a similar condition. It falls under the umbrella of autoimmune encephalitis. While the author of the book's disease was the result of anti-nmdar antibodies, my daughter's antibodies have yet to be diagnosed. Hers is unbelievably the result of a strep reaction. My belief is that hers was an intensely virulent strain that she acquired last March. The strep bacteria cross-reacts, or mimics, healthy brain, joint or heart muscles and then the antibodies start attacking these healthy cells thinking they are the strep bacteria. The basal ganglia inflames causing overnight OCD, tics, chorea and other cognitive impairments.

The treatment is initially antibiotics for the more difficult cases, the treatment is several IVIG infusions that run between $10-$15K and insurance does not cover it.

It has been an extraordinarily tough few months. Reading the posts in the middle of the night, perched in a corner of her room in Durham has made for some well-needed distraction.

Soleil wrote:Coincidentally, I am just returning from Duke University where my teen daughter was being diagnosed and treated with a similar condition. It falls under the umbrella of autoimmune encephalitis. While the author of the book's disease was the result of anti-nmdar antibodies, my daughter's antibodies have yet to be diagnosed. Hers is unbelievably the result of a strep reaction. My belief is that hers was an intensely virulent strain that she acquired last March. The strep bacteria cross-reacts, or mimics, healthy brain, joint or heart muscles and then the antibodies start attacking these healthy cells thinking they are the strep bacteria. The basal ganglia inflames causing overnight OCD, tics, chorea and other cognitive impairments.

The treatment is initially antibiotics for the more difficult cases, the treatment is several IVIG infusions that run between $10-$15K and insurance does not cover it.

It has been an extraordinarily tough few months. Reading the posts in the middle of the night, perched in a corner of her room in Durham has made for some well-needed distraction.

Intresting. First let me say sorry about your daughter and I pray she will be well.

You say it is your belief that her symtoms are caused by strep, what does the doctor say? Did they do a CSF tap and find strep and diagnosis her with baterial menagitis?

im curious so pardon me for asking these questions but I am very interested in this topic and have done some research on it.

thanks

Soleil wrote:Coincidentally, I am just returning from Duke University where my teen daughter was being diagnosed and treated with a similar condition. It falls under the umbrella of autoimmune encephalitis. While the author of the book's disease was the result of anti-nmdar antibodies, my daughter's antibodies have yet to be diagnosed. Hers is unbelievably the result of a strep reaction. My belief is that hers was an intensely virulent strain that she acquired last March. The strep bacteria cross-reacts, or mimics, healthy brain, joint or heart muscles and then the antibodies start attacking these healthy cells thinking they are the strep bacteria. The basal ganglia inflames causing overnight OCD, tics, chorea and other cognitive impairments.

The treatment is initially antibiotics for the more difficult cases, the treatment is several IVIG infusions that run between $10-$15K and insurance does not cover it.

It has been an extraordinarily tough few months. Reading the posts in the middle of the night, perched in a corner of her room in Durham has made for some well-needed distraction.

I'm so sorry about your daughter's condition and pray for her swift and full recovery. Strep throat is dangerous if left untreated. My granddaughter developed strep throat and a possible UTI three months after the oil spill when BP way spraying the area with Corexit. Coincidence? I think not. She had seen a doctor, but there is more than one type of strep, and the test didn't detect hers, so complications were beginnning to develop. She was 2 at the time. Very scary. Thankfully, the antibiotics, once they were administered, cleared everything up. Strep throat can often be distinguished by a white coating on the back of the throat, along with persistent cough and high fever. If you're unsure, see a doctor right away, even if it means going to the ER.

TEOTWAWKI wrote:http://philadelphia.cbslocal.com/2013/02/07/health-mysterious-disease-discovered-locally-strikes-mainly-young-women/

Pennsylvania has a program that encourages young teens of both sexes to be vaccinated against the HPV virus, and they don't need parental consent. I have very strong reservations about the efficacy of this vaccine and the need for it.

But, why not men too? It would have been good to explain this oddity.

Actually the ratio of boys to girls with strep related encephalitis is 3:1.

Thank you FLTexan. While I am doubtful of the link between the oil spill and this disease, my daughter is a surfer and has been in the water many days since the spill as we live directly on the gulf.

Soleil wrote:Actually the ratio of boys to girls with strep related encephalitis is 3:1.

Thank you FLTexan. While I am doubtful of the link between the oil spill and this disease, my daughter is a surfer and has been in the water many days since the spill as we live directly on the gulf.

I dont think there's a connection between your daughters disease and this brain on fire disease.

Bacteria encephalitis is easily detected and would not be a mystery as this brain on fire condition is.

Here's some information about encephalitis.
http://www.ninds.nih.gov/disorders/encephalitis_meningitis/detail_encephalitis_meningitis.htm#174303083

Here's some good information on streptococcus as well.
http://en.wikipedia.org/wiki/Streptococcus

This "brain on fire" condition is in my opinion ( which isnt worth much to most ) a result of a chemical reaction. I came to this hypothesis by looking at the NDMA receptor it was attacking.
http://en.wikipedia.org/wiki/NMDA_receptor_antagonist

My guess is they will eventually find some common denominator to these girls gettin the brain on fire disorder, and it will be some form of drug/chemical. My first guess is http://en.wikipedia.org/wiki/Methylenedioxypyrovalerone

Hope your daughter recovers soon from her ailment.

Chrissy wrote:

Soleil wrote:Actually the ratio of boys to girls with strep related encephalitis is 3:1.

Thank you FLTexan. While I am doubtful of the link between the oil spill and this disease, my daughter is a surfer and has been in the water many days since the spill as we live directly on the gulf.

I dont think there's a connection between your daughters disease and this brain on fire disease.

Bacteria encephalitis is easily detected and would not be a mystery as this brain on fire condition is.

Here's some information about encephalitis.
http://www.ninds.nih.gov/disorders/encephalitis_meningitis/detail_encephalitis_meningitis.htm#174303083

Here's some good information on streptococcus as well.
http://en.wikipedia.org/wiki/Streptococcus

This "brain on fire" condition is in my opinion ( which isnt worth much to most ) a result of a chemical reaction. I came to this hypothesis by looking at the NDMA receptor it was attacking.
http://en.wikipedia.org/wiki/NMDA_receptor_antagonist

My guess is they will eventually find some common denominator to these girls gettin the brain on fire disorder, and it will be some form of drug/chemical. My first guess is http://en.wikipedia.org/wiki/Methylenedioxypyrovalerone

Hope your daughter recovers soon from her ailment.

Oh Good God Almighty! A lab tech is making medical diagnosis' now.

Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

TEOTWAWKI wrote:Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

Ive actually had several long conversations with pathologist about diseases. Often they have come to me and ask what kind of test do we have that could help with a case they were working on. Of course they were not seeking my medical oppinion but just using me as a bouncing board, and also using me for my extensive knowledge of immunochemistry.

I clearly NEVER oftered any medical advice or made any diagnosis. I CLEARLY said it was my OPINION and a hypothesis of mine that didnt have much weight. I am allowed to THINK about stuff and i am allowed to make assumptions, guesses and hypothesis as I will do since these types of topics interest me.

dreams has no bussiness trying to humilate me on any science subject as I know MUCH more than her about health sciences. Shes just grumpy because her feet are seeping gray stuff probaly because her nasty filthy gunk filled toenails are out of control.

Chrissy wrote:

TEOTWAWKI wrote:Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

Ive actually had several long conversations with pathologist about diseases. Often they have come to me and ask what kind of test do we have that could help with a case they were working on. Of course they were not seeking my medical oppinion but just using me as a bouncing board, and also using me for my extensive knowledge of immunochemistry.

I clearly NEVER oftered any medical advice or made any diagnosis. I CLEARLY said it was my OPINION and a hypothesis of mine that didnt have much weight. I am allowed to THINK about stuff and i am allowed to make assumptions, guesses and hypothesis as I will do since these types of topics interest me.

dreams has no bussiness trying to humilate me on any science subject as I know MUCH more than her about health sciences. Shes just grumpy because her feet are seeping gray stuff probaly because her nasty filthy gunk filled toenails are out of control.

Were you drunk of sober when you talked to them-makes difference? You're right you opinions don't have much weight.

Dreamsglore wrote:

Chrissy wrote:

TEOTWAWKI wrote:Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

Ive actually had several long conversations with pathologist about diseases. Often they have come to me and ask what kind of test do we have that could help with a case they were working on. Of course they were not seeking my medical oppinion but just using me as a bouncing board, and also using me for my extensive knowledge of immunochemistry.

I clearly NEVER oftered any medical advice or made any diagnosis. I CLEARLY said it was my OPINION and a hypothesis of mine that didnt have much weight. I am allowed to THINK about stuff and i am allowed to make assumptions, guesses and hypothesis as I will do since these types of topics interest me.

dreams has no bussiness trying to humilate me on any science subject as I know MUCH more than her about health sciences. Shes just grumpy because her feet are seeping gray stuff probaly because her nasty filthy gunk filled toenails are out of control.

Were you drunk of sober when you talked to them-makes difference? You're right you opinions don't have much weight.

sober. I was at work.

Now I have had some pretty wild conversations with some of the doctors I have worked with out of work while we all were not sober. Those conversations are better left for my private room though.

Chrissy wrote:

Dreamsglore wrote:

Chrissy wrote:

TEOTWAWKI wrote:Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

Ive actually had several long conversations with pathologist about diseases. Often they have come to me and ask what kind of test do we have that could help with a case they were working on. Of course they were not seeking my medical oppinion but just using me as a bouncing board, and also using me for my extensive knowledge of immunochemistry.

I clearly NEVER oftered any medical advice or made any diagnosis. I CLEARLY said it was my OPINION and a hypothesis of mine that didnt have much weight. I am allowed to THINK about stuff and i am allowed to make assumptions, guesses and hypothesis as I will do since these types of topics interest me.

dreams has no bussiness trying to humilate me on any science subject as I know MUCH more than her about health sciences. Shes just grumpy because her feet are seeping gray stuff probaly because her nasty filthy gunk filled toenails are out of control.

Were you drunk of sober when you talked to them-makes difference? You're right you opinions don't have much weight.

sober. I was at work.

Now I have had some pretty wild conversations with some of the doctors I have worked with out of work while we all were not sober. Those conversations are better left for my private room though.

Yeah, take them there so you can converse w/ yourself.LOL!

Dreamsglore wrote:

Chrissy wrote:

Dreamsglore wrote:

Chrissy wrote:

TEOTWAWKI wrote:Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

Ive actually had several long conversations with pathologist about diseases. Often they have come to me and ask what kind of test do we have that could help with a case they were working on. Of course they were not seeking my medical oppinion but just using me as a bouncing board, and also using me for my extensive knowledge of immunochemistry.

I clearly NEVER oftered any medical advice or made any diagnosis. I CLEARLY said it was my OPINION and a hypothesis of mine that didnt have much weight. I am allowed to THINK about stuff and i am allowed to make assumptions, guesses and hypothesis as I will do since these types of topics interest me.

dreams has no bussiness trying to humilate me on any science subject as I know MUCH more than her about health sciences. Shes just grumpy because her feet are seeping gray stuff probaly because her nasty filthy gunk filled toenails are out of control.

Were you drunk of sober when you talked to them-makes difference? You're right you opinions don't have much weight.

sober. I was at work.

Now I have had some pretty wild conversations with some of the doctors I have worked with out of work while we all were not sober. Those conversations are better left for my private room though.

Yeah, take them there so you can converse w/ yourself.LOL!

I dont feel like it right now. at least I know how to create a room at the drop of a dime. it is actually fun for me and i am writing a erotic story there that i plan on trying to have published. what can you do? cry about your toenails and gray seepage?

Chrissy wrote:

Dreamsglore wrote:

Chrissy wrote:

Dreamsglore wrote:

Chrissy wrote:

TEOTWAWKI wrote:Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

Ive actually had several long conversations with pathologist about diseases. Often they have come to me and ask what kind of test do we have that could help with a case they were working on. Of course they were not seeking my medical oppinion but just using me as a bouncing board, and also using me for my extensive knowledge of immunochemistry.

I clearly NEVER oftered any medical advice or made any diagnosis. I CLEARLY said it was my OPINION and a hypothesis of mine that didnt have much weight. I am allowed to THINK about stuff and i am allowed to make assumptions, guesses and hypothesis as I will do since these types of topics interest me.

dreams has no bussiness trying to humilate me on any science subject as I know MUCH more than her about health sciences. Shes just grumpy because her feet are seeping gray stuff probaly because her nasty filthy gunk filled toenails are out of control.

Were you drunk of sober when you talked to them-makes difference? You're right you opinions don't have much weight.

sober. I was at work.

Now I have had some pretty wild conversations with some of the doctors I have worked with out of work while we all were not sober. Those conversations are better left for my private room though.

Yeah, take them there so you can converse w/ yourself.LOL!

I dont feel like it right now. at least I know how to create a room at the drop of a dime. it is actually fun for me and i am writing a erotic story there that i plan on trying to have published. what can you do? cry about your toenails and gray seepage?

You will need to go back to school to learn how to write and spell properly before you write a story. Talk about delusions? LOL!

Dreamsglore wrote:

Chrissy wrote:

Dreamsglore wrote:

Chrissy wrote:

Dreamsglore wrote:

Chrissy wrote:

TEOTWAWKI wrote:Oh come on. I have seen doctors ask techs what they thought. Medicine is still an art and even witchdoctors understood some things better than our "modern " Docs.

Ive actually had several long conversations with pathologist about diseases. Often they have come to me and ask what kind of test do we have that could help with a case they were working on. Of course they were not seeking my medical oppinion but just using me as a bouncing board, and also using me for my extensive knowledge of immunochemistry.

I clearly NEVER oftered any medical advice or made any diagnosis. I CLEARLY said it was my OPINION and a hypothesis of mine that didnt have much weight. I am allowed to THINK about stuff and i am allowed to make assumptions, guesses and hypothesis as I will do since these types of topics interest me.

dreams has no bussiness trying to humilate me on any science subject as I know MUCH more than her about health sciences. Shes just grumpy because her feet are seeping gray stuff probaly because her nasty filthy gunk filled toenails are out of control.

Were you drunk of sober when you talked to them-makes difference? You're right you opinions don't have much weight.

sober. I was at work.

Now I have had some pretty wild conversations with some of the doctors I have worked with out of work while we all were not sober. Those conversations are better left for my private room though.

Yeah, take them there so you can converse w/ yourself.LOL!

I dont feel like it right now. at least I know how to create a room at the drop of a dime. it is actually fun for me and i am writing a erotic story there that i plan on trying to have published. what can you do? cry about your toenails and gray seepage?

You will need to go back to school to learn how to write and spell properly before you write a story. Talk about delusions? LOL!

LOL

I would not do this except that this is important. Please ladies can you
leave the normal bickering off this thread? Just as a favor I really have nothing against either of you. A child's life is in the balance. The gravity of which I know both of you understand. Thanks!

I am thinking of loading creatine in my training regime I am apparatly the last person in the world to find out about the advantages in hydration when in heavy training.

I also read they are starting to experiment with creatine for auto immune disease. Have either of you heard about this? Thoughts?

surfnrg wrote:I would not do this except that this is important. Please ladies can you
leave the normal bickering off this thread? Just as a favor I really have nothing against either of you. A child's life is in the balance. The gravity of which I know both of you understand. Thanks!

I am thinking of loading creatine in my training regime I am apparatly the last person in the world to find out about the advantages in hydration when in heavy training.

I also read they are starting to experiment with creatine for auto immune disease. Have either of you heard about this? Thoughts?

Im not allowed to offer my opnion. Im just a peon laboratory manager.

I dont know about any childs life being at risk from the brain on fire disorder here. I would have been glad to offer suggestions if there was someone who had a situation. but again. I am not allowed and as you can see my thoughts dont really count here.

So youll have to defer to dreams. she's the expert in scientific medical testing.

Experts have many times been befuddled and a grade school kid solve the problem doctors and experts dont have a corner on the market.

I was wondering if there was any validity to creatine as it certainly reduces swelling and has ancillary benefits besides enhanced lean muscle growth?

surfnrg wrote:Experts have many times been befuddled and a grade school kid solve the problem doctors and experts dont have a corner on the market.

I was wondering if there was any validity to creatine as it certainly reduces swelling and has ancillary benefits besides enhanced lean muscle growth?

Im not sure what you want?

I know people use creatine suppliments in body building. My nephew did when he was on the football team. That and protien shakes.

here's a article on it
http://men.webmd.com/creatine

If you are reering to the auto immune effects from what ever this peron is having , which ist clear to me btw. I would have to say that steroids is the most effective treatment. I have bad allergies and when i went to costa rica one time I came down with a reaction, thought they were not going to let me back in the country. I looked like the elephant man.

I had to take predisone and epi shots

so basically what I am saying is if you want to knock your immun system down, you dose on prednisone. This is common knowledge.

I need to know specifics about what your dealing with. i mean heck I might not be able to help as all, but perhaps I can think of a few quetions to ask to get you there.

http://ajp.psychiatryonline.org/article.aspx?articleid=106753#Treatment


Here is a good discussion

It touches upon auto immune encephilitis also

surfnrg wrote:http://ajp.psychiatryonline.org/article.aspx?articleid=106753#Treatment


Here is a good discussion

It touches upon auto immune encephilitis also

Thats a good article. They as well reccomend the use of a steroid such as prednisilone with the use of antibody therapy(IVIg, intrvenous immunoglobins).

What was interesting from that as well is that teratomas could cause this condition. Has your freinds had her ovaries checked?

On the NIH website link I gave it said a multitude of viruses as well could cause this, even simple herpies simplex which is very common. Not implying thats it, its just that is very common. and its also related to chicken pox and people are getting vaccines for chicken pox these days. My mind wonders now about that if there is a corrolation.

Basically they really dont know what causes it. I can say that bacteria especially streptococcus is highly unlikly. And that bacteria is easy to test for. so easy.

With all that said, at least they know how to treat the symtoms once they figure out a immune response is occuring.

If I was the parent of this child I would think, any recent vaccines? when was her ovaries check last? did they take serum and do a viral load to check for multiple varieties of viruses? Is it possible she got into some chemical, we should rule out chemicals. There is much documentation of certain chemicals even prescription drugs and non prescription drugs causing this effect.

Sorry im not much help. but my heart does go out to her. As a mother myself I know I would be desperate for anything. I could offer to ask the pathologist I work with if she had any thoughts on it, if you or she wanted.

best wishes.

Thanks chrissy

There also a known condition called " pandas" which is a rapid onset of neurological symptoms that are directly related to strep infection. There are tests thar measure titers i am sure you are familiar. These have been indicators for a possible diagnosis of pandas.

This is all cutting edge science. And while the diagnosis of auto immune enciphalitis is bad one of the other possibilities of huntingtons would be much much worse. I have read about the possibiilty of ovary involvement i am sure they are leaving no stone inturned. I also have daughters and can only imagine what they are going through.

surfnrg wrote:Thanks chrissy

There also a known condition called " pandas" which is a rapid onset of neurological symptoms that are directly related to strep infection. There are tests thar measure titers i am sure you are familiar. These have been indicators for a possible diagnosis of pandas.

This is all cutting edge science. And while the diagnosis of auto immune enciphalitis is bad one of the other possibilities of huntingtons would be much much worse. I have read about the possibiilty of ovary involvement i am sure they are leaving no stone inturned. I also have daughters and can only imagine what they are going through.

Not necessary to thank me. Ive offered nothing really.

I can say that during my time there pcola does have a very high incidence of teratomas. more than i have seen elsewhere. I would hate for it to be a teratoma for such a young girl but at least that is curable with surgery with no chance of reoccurance.

Im not familiar with panda's disease to be honest with you. I looked it up though. Thihs institute is seeking patients for research as this disease is relativly new and not yet verified.

http://intramural.nimh.nih.gov/pdn/web.htm

Perhaps your freind could send a sample or some info to them? Couldnt hurt and it doesnt cost to be in these researches.