Hi Everyone,

I seriously, have had several infections to fight the last couple years.

Lyme, Bartonella, and possiable R fever ( from strep throat), on top of everything else. In other words, a collage. Bartonella and strep throat infections cause permanent heart damage.

I have permanent heart damage due to the infection connection with RSD.

Genes and strep article:

http://findarticles.com/p/articles/m...1/ai_n10145152


This RSD DX is nothing to full around about.

My brain was supposed to be protected but it wasn't. It's an MD's job to find out what got in their.

They need to find the missing link in other words. You need real Doctors.

I hope and pray you will not wait to it's to little to late.
Hugs, Roz

P.S. My spit test come out neg-. for strep it can lay dormant and then rule it's ugly head. My mum died from it, their is a 10% genetic link, in my case.

[Curious]

Roz, you one sentence jumped out at me..

My brain was supposed to be protected but it wasn't

Have you done any research in blood brain barrier?

On the PD forum, Ron Hutton has done extensive research. His posts will have BBB. Many meds cross the BBB.

Interesting stuff.

[mrsD]

My mother had severe Rheumatic fever with St. Vitus dance, and heart damage. This was years before antibiotics.

I have had strep and worried too, but then a doctor at a teaching hospital told me that people with blue/gray eyes are more prone to the autoimmune response from strep. (I have brown/hazel eyes). My mother's were gray.
Strep can also thru molecular mimicry attack brain cells that control movements, and cause a form of Tourette's syndrome. This is called PANDAs. This tendency only happens with people who have a genetic tendency for it.

Not everyone who gets strep develops the scarlet fever, kidney or heart damage.

The blood brain barrier research is very exciting today. There is a compound called Zonulin which will open spaces in the BBB and let things thru. Not everyone has this situation however. And there are no tests to tell who has yet. Only so far that the potential exists.

You certainly have been thru alot. You are a strong gal, that is for sure!

Dear Mrs, C&D,

I am still fighting the infection in my heart, I am on high dose Erthyomycin, I am allergic to Penicillin. The Herx. reactions are really rough at times.

P/D has been ruled out for me. I was bite by a tick prior to my RSD DX, but then again so was Michael Fox. I do not have any tremors.

The same SX match exactly with Bartonella ( co-infection of Lyme) and R-Fever. I could have both, maybe my mum did as well? I have been on antibiotics for nearly 2 years, due to my heart.

My eyes are blue gray but my mums were brown.

My blood work is going to the best labs. in the States. Which my PPO insurance is not covering.

Cardio. wanted me the hospital in a procedure called transesophageal echo., but I believe I can get thru it without being a Science Project for them at the University Hospital I was reffered out to. The only thing they could do is a pacemaker. Which I need that like I need a hole in my head.

I really believe I will get thru this, but I just don't want this to happen to anyone else.

The Zonulin seems like such a great thing but I have a gluten allergy, so I'm not sure if I can take it???

Thanks so much, Roz

[mrsD]

Originally Posted by buckwheat

Dear Mrs, C&D,

I am still fighting the infection in my heart, I am on high dose Erthyomycin, I am allergic to Penicillin. The Herx. reactions are really rough at times.

P/D has been ruled out for me. I was bite by a tick prior to my RSD DX, but then again so was Michael Fox. I do not have any tremors.

The same SX match exactly with Bartonella ( co-infection of Lyme) and R-Fever. I could have both, maybe my mum did as well? I have been on antibiotics for nearly 2 years, due to my heart.

My eyes are blue gray but my mums were brown.

My blood work is going to the best labs. in the States. Which my PPO insurance is not covering.

Cardio. wanted me the hospital in a procedure called transesophageal echo., but I believe I can get thru it without being a Science Project for them at the University Hospital I was reffered out to. The only thing they could do is a pacemaker. Which I need that like I need a hole in my head.

I really believe I will get thru this, but I just don't want this to happen to anyone else.

The Zonulin seems like such a great thing but I have a gluten allergy, so I'm not sure if I can take it???

Thanks so much, Roz

Zonulin is not a drug. It is name for the compound that has been found that opens the channels in GI tract and BBB.
Since you are gluten intolerant you might want to Google it and read up.

There is a drug in phase II to BLOCK Zonulin receptors and thereby reduce the ability for gluten to pass thru the channels into the blood stream. It was only recently that Zonulin was found in the BBB.

So the research into Zonulin/Celiac/gluten intolerance may someday lead to improved BBB functions in the future.
This is not applicable to clinical issues yet.
You can read more here:
http://www.celiac.com/articles/959/1...ase/Page1.html
I am sorry I don't know the status of the proposed drug yet.

Originally Posted by Curious

Roz, you one sentence jumped out at me..



Have you done any research in blood brain barrier?

On the PD forum, Ron Hutton has done extensive research. His posts will have BBB. Many meds cross the BBB.

Interesting stuff.

Dear Curious,

I am curious too.

I cannot find anything on the Parkinson's or the neuropathy link about Ron Hutton.

Could you give me a hink?

Hugs, roz

[mrsD]

Originally Posted by buckwheat

Dear Curious,

I am curious too.

I cannot find anything on the Parkinson's or the neuropathy link about Ron Hutton.

Could you give me a hink?

Hugs, roz

Ron Hutton is a poster here. If you go to Members list and put in his name, then all his past 500 will come up like this:

His user ID has no space between the names.
http://neurotalk.psychcentral.com/se...g_searchinfo=1

The Parkinson's forum is really a great resource. Lots of information over there!

Originally Posted by mrsD

Ron Hutton is a poster here. If you go to Members list and put in his name, then all his past 500 will come up like this:

His user ID has no space between the names.
http://neurotalk.psychcentral.com/se...g_searchinfo=1

The Parkinson's forum is really a great resource. Lots of information over there!

Dear D,

Thanks so much for taking the time to help me, I do not know the computer that well. I have 3 son's the only one with blue eyes has a history of Strep.

Much Love, Roz

Dear C,

You gave me an English bloat to chase after. I have done some research on the BBB.

Much love, roz