Thanks for all the Lyme info

[Kayanne]

I also think that the more information a person has the better equipped they are to deal with their issues...or to help someone else. I, too, want to add my thanks to the people who have posted about lyme.

 

I am curious, though, are the neuropsych side effects from lyme considered a secondary, autoimmune response? Or is it more of a direct effect the bacteria has on the brain? Do the doctors/researchers know this yet?

 

Thanks!

 

~Karen

Karen,

 

This is a good question. It is considered a direct effect of the spirochetes on the brain. I have seen many references to Lyme being an auto-immune problem on this board and, while a lyme patient can have an auto-immune problem, having lyme does not mean necessarily that you have an auto-immune problem. These patients get better and many get rid of all their symptoms with the right treatment. The lyme doctors believe that anyone who still has lyme symptoms is not ready to stop treatment (and this includes neuropsychiatric symptoms for sure). There is a lot of conflicting info on the internet about lyme disease. Your "traditional" sources of info are often wrong.

At the heart of the controversy over the diagnosis and treatment of lyme disease is a small group of infectious disease doctors who are in charge of the Infectious Disease Society of America. Connecticut Attorney General Blumenthal sued the ISDA in May of 2008 and charged them with flawed guidelines for the diagnosis and treatment of Lyme Disease and charged that 9 out of 12 have financial conflicts of interest related to Lyme Disease. They created a new panel to review the ISDA guidelines and last week it was reported that this panel was already violating their agreement with Blumenthal in an attempt to bypass a full vote by the new panel regarding the guidelines. They want to keep the old guidelines in place at any cost. Its an outrage that these doctors are standing in the way of patients who need treatment for Lyme. The book Cure Unknown tells the whole history. There are several personalities who have dominated the lyme discussion for the last 40 years to the detriment of patients with lyme everywhere. You can see them in the movie Under Our Skin and judge for yourself. These doctors say that any patient who presents with symptoms of lyme after antibiotic treatment has their immune system to blame, not a persistent lyme infection. Guess what? There is no treatment necessary if this is the case and some of these doctors routinely testify on behalf of insurance companies, which is a huge conflict. As a mother with a very sick child with lyme I knew who I wanted to treat my family.

 

Thanks for responding. There may be a little confusion on some people's part about neuropsych symptoms of lyme being autoimmune. I had no idea what the prevailing thoughts about lyme infection's effects on the brain are--that's why I asked.

 

I guess it is easy for some people to just assume (at least on this forum) that a lyme infection is triggering an autoimmune response because with PANDAS there is a lot of evidence and research that says this is autoantibodies messing with transmitters in the Basal Ganglia. Most of the time, our children respond to immune therapies.

 

Autoimmunity or direct infection? I do think that one or the other calls for different treatments--and long term prevention. It is important for parents to understand the difference.

 

That being said...lyme may CERTAINLY be a factor in some or many of the "chronic" PANDAS cases...and having the correct information on the disease is essential because a parent may choose an to do IVIG or plasmapheresis for PANDAS, but if a bacterial infection associated with lyme is present...then I don't think they will have a good outcome....but I'm not a doctor!

 

~Karen

[lyme_mom]

I also think that the more information a person has the better equipped they are to deal with their issues...or to help someone else. I, too, want to add my thanks to the people who have posted about lyme.

 

I am curious, though, are the neuropsych side effects from lyme considered a secondary, autoimmune response? Or is it more of a direct effect the bacteria has on the brain? Do the doctors/researchers know this yet?

 

Thanks!

 

~Karen

Karen,

 

This is a good question. It is considered a direct effect of the spirochetes on the brain. I have seen many references to Lyme being an auto-immune problem on this board and, while a lyme patient can have an auto-immune problem, having lyme does not mean necessarily that you have an auto-immune problem. These patients get better and many get rid of all their symptoms with the right treatment. The lyme doctors believe that anyone who still has lyme symptoms is not ready to stop treatment (and this includes neuropsychiatric symptoms for sure). There is a lot of conflicting info on the internet about lyme disease. Your "traditional" sources of info are often wrong.

At the heart of the controversy over the diagnosis and treatment of lyme disease is a small group of infectious disease doctors who are in charge of the Infectious Disease Society of America. Connecticut Attorney General Blumenthal sued the ISDA in May of 2008 and charged them with flawed guidelines for the diagnosis and treatment of Lyme Disease and charged that 9 out of 12 have financial conflicts of interest related to Lyme Disease. They created a new panel to review the ISDA guidelines and last week it was reported that this panel was already violating their agreement with Blumenthal in an attempt to bypass a full vote by the new panel regarding the guidelines. They want to keep the old guidelines in place at any cost. Its an outrage that these doctors are standing in the way of patients who need treatment for Lyme. The book Cure Unknown tells the whole history. There are several personalities who have dominated the lyme discussion for the last 40 years to the detriment of patients with lyme everywhere. You can see them in the movie Under Our Skin and judge for yourself. These doctors say that any patient who presents with symptoms of lyme after antibiotic treatment has their immune system to blame, not a persistent lyme infection. Guess what? There is no treatment necessary if this is the case and some of these doctors routinely testify on behalf of insurance companies, which is a huge conflict. As a mother with a very sick child with lyme I knew who I wanted to treat my family.

 

Thanks for responding. There may be a little confusion on some people's part about neuropsych symptoms of lyme being autoimmune. I had no idea what the prevailing thoughts about lyme infection's effects on the brain are--that's why I asked.

 

I guess it is easy for some people to just assume (at least on this forum) that a lyme infection is triggering an autoimmune response because with PANDAS there is a lot of evidence and research that says this is autoantibodies messing with transmitters in the Basal Ganglia. Most of the time, our children respond to immune therapies.

 

Autoimmunity or direct infection? I do think that one or the other calls for different treatments--and long term prevention. It is important for parents to understand the difference.

 

That being said...lyme may CERTAINLY be a factor in some or many of the "chronic" PANDAS cases...and having the correct information on the disease is essential because a parent may choose an to do IVIG or plasmapheresis for PANDAS, but if a bacterial infection associated with lyme is present...then I don't think they will have a good outcome....but I'm not a doctor!

 

~Karen

Karen,

Exactly! Some treatments for PANDAS could be helpful for lyme but not enough to kill lyme (or Babesia, Bartonella, Mycoplasma, etc). Other treatments for PANDAS could really make any infection worse. The challenge is getting to a doctor who can figure out what is really going on b/c most of the lyme and coinfection tests are not reliable!