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Colleen,

i would subject my family to a study too if it would help figure this thing out!! I was so mad at that doctor!! I wanted to scream, instead I sat there and cried my eyes out right in front of him. How can he tell me nothing is wrong when my sweet fun-loving boy that just changed over night into a terrified, scare shell of his former self. I am an RN and this is partly why I left healthcare, because of arrogant doctors like that!! Sorry I am ranting! There has to be some genetic link, don't you think????

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Colleen,

i would subject my family to a study too if it would help figure this thing out!! I was so mad at that doctor!! I wanted to scream, instead I sat there and cried my eyes out right in front of him. How can he tell me nothing is wrong when my sweet fun-loving boy that just changed over night into a terrified, scare shell of his former self. I am an RN and this is partly why I left healthcare, because of arrogant doctors like that!! Sorry I am ranting! There has to be some genetic link, don't you think????

 

There may be a genetic predisposition to this stuff - you are so right. BUT, it makes you wonder, why so much PANDAS and Autism now? I still question vaccinations - and I'm always shussed by pediatritions on that one. I think there are several components that must be present.. Obviously, the doctor you spoke of must be extremely closed minded, and won't be in history books as a pioneer of anything except ignorance! BTW, both my father and my brother died of leukemia - my father's was actually a drug-induced reaction (he had high blood pressure, took Atenenol, and developed Aplastic Anemia, which morphed into Leukemia). When I developed HBP and told docs. about my father (and this is noted in his records), some of them looked at me as if I were crazy! One even went so far as to prescribe Atenenol to me! Sometimes, you just have to follow your gut instincts and find doctors who will "listen" - they are out there, and, thankfully, we have Dr. T here... Couldn't ask for better!!

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Colleen,

i would subject my family to a study too if it would help figure this thing out!! I was so mad at that doctor!! I wanted to scream, instead I sat there and cried my eyes out right in front of him. How can he tell me nothing is wrong when my sweet fun-loving boy that just changed over night into a terrified, scare shell of his former self. I am an RN and this is partly why I left healthcare, because of arrogant doctors like that!! Sorry I am ranting! There has to be some genetic link, don't you think????

 

There may be a genetic predisposition to this stuff - you are so right. BUT, it makes you wonder, why so much PANDAS and Autism now? I still question vaccinations - and I'm always shussed by pediatritions on that one. I think there are several components that must be present.. Obviously, the doctor you spoke of must be extremely closed minded, and won't be in history books as a pioneer of anything except ignorance! BTW, both my father and my brother died of leukemia - my father's was actually a drug-induced reaction (he had high blood pressure, took Atenenol, and developed Aplastic Anemia, which morphed into Leukemia). When I developed HBP and told docs. about my father (and this is noted in his records), some of them looked at me as if I were crazy! One even went so far as to prescribe Atenenol to me! Sometimes, you just have to follow your gut instincts and find doctors who will "listen" - they are out there, and, thankfully, we have Dr. T here... Couldn't ask for better!!

Don't know if anyone's posted this link yet, but, how interesting - mycoplasm is a common co-infection of Lyme, and strep is mentioned in the first few paragraphs. Definitely think Dr. T is right about co-infections causing symptoms. Wonder if PANDAS were treated as if it "were" Lyme's disease - what would happen then? (This is my first time posting link here - hope I did it right!! )

Lyme Disease: Causes, Testing and Treatment

http://www.ra-infection-connection.com/fre...ticles/Lyme.htm

 

Ó 2005 Karl Poehlmann and Katherine Poehlmann, Ph.D.

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One more thing on this

Sorry guys!

I was just wondering about the duration of the bite-

My daugther's been bitten two times, that I noticed, by a tick. Both times she was hiking, and both times, they were removed within an 8- 12 hour period, as soon as they were noticed! I was told by the ped that 48 hours on is when to take it seriously. But just seeing a tick on my daughter makes me take it seriously! Any ideas if even short term presence can cause infection????

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Hah - I've heard Dr. K, Dr. L, and our original DAN doc vent with similar rants. One doc even confided to me that "some of my colleagues are so focused on the business of medicine that they've forgotten about the practice of medicine."

 

In our own professions, we each realize that some members will exemplify the good, the bad, and the ugly. Guess we shouldn't expect doctors be be any different. :(

 

Thanks for the candid post, Dr. T. This is the kind of "expert rant" that restores my faith in medicine!!!

 

 

When I was a medical student at Johns Hopkins, I had the distinct pleasure and privilege of having this man as my attending in medicine for a month. This was in 1984 or 1985, and it was the last time he formally taught medical students.

 

http://en.wikipedia.org/wiki/Victor_A._McKusick

 

He was a God among mortals, but carried himself like a humble priest. I remember him telling us "we are all eternal students".

 

It's hard to believe that this fellow you encountered who "doesn't believe in this" and "doesn't believe in that" has the nerve to put the same two initials after his name as Dr. McKusick.

 

Sadly , we all get to put MD after out names ... so many patients still are awed by the mystique of those letters. There are doctors and then there are DOCTORS. Ye shall not know them by their white coats. Ye shall know them by their fruits.

 

Sorry for the rant, this stuff peeves me off.

 

Dr. T

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Lisa,

 

There is a lot of supportive help 'believers' in the Bay Area. Most of us see the same Dr.'s. I am not sure where you are located but more than happy to help direct you to those Dr.'s. We have been to Dr. K too....... We have also tested everyone in the family only to discover my husband's titers were high as well as having all three children PANDAS. In our situation, we were also able to document the event when everyone got sick and other children outside the family that have also been effected similarly.

 

-Wendy

 

Dr. T.

I find this all very interesting. My son has recently been dx with PANDAS by his pediatrician and Dr. K. this is his first episode caught within the first 30 days so I am hopeful early detection has helped our prognosis. He is 95 % better on day 14 of Antibiotics. That said We went to the" on call" pediatrician as my older non pandas son now has strep. I preceded to tell him about my middle son with PANDAS and he told me he does not believe in PANDAS , as strep has been around "forever" and we never saw this before. I just started to cry and tell him I know this is real !! why is my son better on antibiotics. He told me to read the book every patient tells a story.( I guess it talks about controversial disease he stated ) This Doctor also said he doesn't believe in late stage lyme. OMG I think to myself, are you kidding me. I tell him my mother and sister both have late stage lyme. My niece either has lyme related behavior issues or PANDAS she is in the middle of trying to get diagnosed. He states" something's wrong with your family" Ok tell me what it is besides "bad genes" He says I don't know but you need to bring your son to an infectious disease doctor in the bay area. With this statement of "something's wrong with your family." I started to think about the genetic component involved. Why do so many people get over lyme fine and others do not. My sister had a months of doxy when first bit but is still so sick, she has been sick 3 years now. My mom has been sick with lyme for years 15 + or so. Why does simple strep affect our pandas kids so badly. I know they say there is a genetic predisposition for PANDAS, what about for chronic lyme ( could that bacteria be causing an autoimmune response in some people? i.e. my family!! Is there any genetic testing studies out there that my family could do? I don't believe it is just coincidence that 4 members of my immediate family have either chronic lyme or PANDAS!!! There has to be a connection. Just wish I knew :( Lisa

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Lisa,

 

There is a lot of supportive help 'believers' in the Bay Area. Most of us see the same Dr.'s. I am not sure where you are located but more than happy to help direct you to those Dr.'s. We have been to Dr. K too....... We have also tested everyone in the family only to discover my husband's titers were high as well as having all three children PANDAS. In our situation, we were also able to document the event when everyone got sick and other children outside the family that have also been effected similarly.

 

-Wendy

 

Dr. T.

I find this all very interesting. My son has recently been dx with PANDAS by his pediatrician and Dr. K. this is his first episode caught within the first 30 days so I am hopeful early detection has helped our prognosis. He is 95 % better on day 14 of Antibiotics. That said We went to the" on call" pediatrician as my older non pandas son now has strep. I preceded to tell him about my middle son with PANDAS and he told me he does not believe in PANDAS , as strep has been around "forever" and we never saw this before. I just started to cry and tell him I know this is real !! why is my son better on antibiotics. He told me to read the book every patient tells a story.( I guess it talks about controversial disease he stated ) This Doctor also said he doesn't believe in late stage lyme. OMG I think to myself, are you kidding me. I tell him my mother and sister both have late stage lyme. My niece either has lyme related behavior issues or PANDAS she is in the middle of trying to get diagnosed. He states" something's wrong with your family" Ok tell me what it is besides "bad genes" He says I don't know but you need to bring your son to an infectious disease doctor in the bay area. With this statement of "something's wrong with your family." I started to think about the genetic component involved. Why do so many people get over lyme fine and others do not. My sister had a months of doxy when first bit but is still so sick, she has been sick 3 years now. My mom has been sick with lyme for years 15 + or so. Why does simple strep affect our pandas kids so badly. I know they say there is a genetic predisposition for PANDAS, what about for chronic lyme ( could that bacteria be causing an autoimmune response in some people? i.e. my family!! Is there any genetic testing studies out there that my family could do? I don't believe it is just coincidence that 4 members of my immediate family have either chronic lyme or PANDAS!!! There has to be a connection. Just wish I knew :D Lisa

Wendy, we are in Northern NV, near lake tahoe. we have an appt. with a rhuematologist at ucsf in April. Our believer pediatrician is sending us there. I am not even sure if this rhuematologist is worth seeing. Not sure that i can post her name on here or not. If you have names and know how to send them to me that would be great! thanks so much. Lisa

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One more thing on this

Sorry guys!

I was just wondering about the duration of the bite-

My daugther's been bitten two times, that I noticed, by a tick. Both times she was hiking, and both times, they were removed within an 8- 12 hour period, as soon as they were noticed! I was told by the ped that 48 hours on is when to take it seriously. But just seeing a tick on my daughter makes me take it seriously! Any ideas if even short term presence can cause infection????

 

I read this advice often too -- about how if you get the tick off within certain amount of hours that you will be safe. However, this is not really true or reliable (just one of those things that keeps on getting passed on incorrectly).

 

Yes, you certainly have a better chance the sooner you get that tick off. But it would be wrong to say that this is sureproof for not contracting something. Especially if you improperly remove a tick.

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I see a number of people from the West Coast posting here.

 

Is there any sense that "West Coast Lyme" is different than the classical Connecticut-Long Island "East Coast Lyme" ?

 

Bb-Lyme seems to be present in most of the east, as far south as mid Alabama, as far north as Maine, as far west as Illinois. It seems to be less common in the midwest (especially the Rockies) but common again up and down the West Coast.

 

I know there are other spirochetal illnesses (i.e RMSF) that are more common in the Rockies than here, so no part of this country seems to be free of spirochetes.

 

Since I've had the pleasure of talking to people all over the country, I feel I better learn more about the geography of infectious disease

 

Dr. T

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I see a number of people from the West Coast posting here.

 

Is there any sense that "West Coast Lyme" is different than the classical Connecticut-Long Island "East Coast Lyme" ?

 

Bb-Lyme seems to be present in most of the east, as far south as mid Alabama, as far north as Maine, as far west as Illinois. It seems to be less common in the midwest (especially the Rockies) but common again up and down the West Coast.

 

I know there are other spirochetal illnesses (i.e RMSF) that are more common in the Rockies than here, so no part of this country seems to be free of spirochetes.

 

Since I've had the pleasure of talking to people all over the country, I feel I better learn more about the geography of infectious disease

 

Dr. T

Dr. T,

 

You need to read Cure Unknown for a good overview of the Lyme problem. Pamela Weintraub explains that the ticks that carry lyme can be found from coast to coast. There are sometimes regional characteristics but you can get the same lyme disease in NY that you get in California b/c the ticks are all over the country now. The midwest has a huge lyme problem but many do not know this. Likewise there is a huge problem in the South (NC and SC) but they do not know this. In fact the NC and SC Medical Boards have made it impossible for doctors to treat lyme in those states. They have found Lyme Disease in every state now. The CDC data on this is a gross underestimate of what is really going on. Another good book is Insights into Lyme Disease Treatment by Connie Strasheim. 13 LL practitioners share their approach to treating lyme.

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I see a number of people from the West Coast posting here.

 

Is there any sense that "West Coast Lyme" is different than the classical Connecticut-Long Island "East Coast Lyme" ?

 

Bb-Lyme seems to be present in most of the east, as far south as mid Alabama, as far north as Maine, as far west as Illinois. It seems to be less common in the midwest (especially the Rockies) but common again up and down the West Coast.

 

I know there are other spirochetal illnesses (i.e RMSF) that are more common in the Rockies than here, so no part of this country seems to be free of spirochetes.

 

Since I've had the pleasure of talking to people all over the country, I feel I better learn more about the geography of infectious disease

 

Dr. T

Dr. T,

 

You need to read Cure Unknown for a good overview of the Lyme problem. Pamela Weintraub explains that the ticks that carry lyme can be found from coast to coast. There are sometimes regional characteristics but you can get the same lyme disease in NY that you get in California b/c the ticks are all over the country now. The midwest has a huge lyme problem but many do not know this. Likewise there is a huge problem in the South (NC and SC) but they do not know this. In fact the NC and SC Medical Boards have made it impossible for doctors to treat lyme in those states. They have found Lyme Disease in every state now. The CDC data on this is a gross underestimate of what is really going on. Another good book is Insights into Lyme Disease Treatment by Connie Strasheim. 13 LL practitioners share their approach to treating lyme.

 

As I'm reading more deeply into Lyme literature I can appreciate a huge political component. Connecticut (the state where Lyme was born) just passed a law (66-0, I might add!) approving use of chronic antibiotics in Lyme disease. I wasn't aware of this until recently

 

http://www.canlyme.com/Connecticut_Lyme_law.html

 

I wonder if there will ever be laws ensuring treatment of PANDAS patients - I fear the cost-cutting measures of "evidence based medicine" are going to make treating PANDAS difficult in the future.

 

Dr. T

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I wonder if there will ever be laws ensuring treatment of PANDAS patients - I fear the cost-cutting measures of "evidence based medicine" are going to make treating PANDAS difficult in the future.

 

Dr. T

 

I've been pondering that exact same thought for the last week!!!!!

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I see a number of people from the West Coast posting here.

 

Is there any sense that "West Coast Lyme" is different than the classical Connecticut-Long Island "East Coast Lyme" ?

 

Bb-Lyme seems to be present in most of the east, as far south as mid Alabama, as far north as Maine, as far west as Illinois. It seems to be less common in the midwest (especially the Rockies) but common again up and down the West Coast.

 

I know there are other spirochetal illnesses (i.e RMSF) that are more common in the Rockies than here, so no part of this country seems to be free of spirochetes.

 

Since I've had the pleasure of talking to people all over the country, I feel I better learn more about the geography of infectious disease

 

Dr. T

Dr. T,

 

You need to read Cure Unknown for a good overview of the Lyme problem. Pamela Weintraub explains that the ticks that carry lyme can be found from coast to coast. There are sometimes regional characteristics but you can get the same lyme disease in NY that you get in California b/c the ticks are all over the country now. The midwest has a huge lyme problem but many do not know this. Likewise there is a huge problem in the South (NC and SC) but they do not know this. In fact the NC and SC Medical Boards have made it impossible for doctors to treat lyme in those states. They have found Lyme Disease in every state now. The CDC data on this is a gross underestimate of what is really going on. Another good book is Insights into Lyme Disease Treatment by Connie Strasheim. 13 LL practitioners share their approach to treating lyme.

 

As I'm reading more deeply into Lyme literature I can appreciate a huge political component. Connecticut (the state where Lyme was born) just passed a law (66-0, I might add!) approving use of chronic antibiotics in Lyme disease. I wasn't aware of this until recently

 

http://www.canlyme.com/Connecticut_Lyme_law.html

 

I wonder if there will ever be laws ensuring treatment of PANDAS patients - I fear the cost-cutting measures of "evidence based medicine" are going to make treating PANDAS difficult in the future.

 

Dr. T

Dr. T,

That's right. If you go to Under Our Skin.com you can see a trailer for the movie. The movie is $35 is you want to buy it. Its worth it. Its an outrage what the ISDA is doing to lyme patients everywhere who need more than 3 weeks of antibiotics. We have had some outrageous experiences with doctors who do not understand and do not believe in lyme disease. A pediatric neurologist at Children's Hospital told me that 1. my son would never have his Bells Palsy improve (which it did btw), 2) that he had never heard of Bartonella (even tho it causes neurological symptoms!) and 3) there is no way a tick can give you two diseases (laughable). Also we had trouble getting my son a picc line at our local hospital even with a doctor's order. They wanted proof he had CNS involvement which should not have been necessary. We finally went to another hospital in another state and had no problem having our doctor's order filled for the picc line. It felt like we were in the former Soviet Union at times. Luckily I read Cure Unknown early on and I was forewarned regarding the controversy. Its a must read for anyone interested in LD.

lyme mom

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I see a number of people from the West Coast posting here.

 

Is there any sense that "West Coast Lyme" is different than the classical Connecticut-Long Island "East Coast Lyme" ?

 

Bb-Lyme seems to be present in most of the east, as far south as mid Alabama, as far north as Maine, as far west as Illinois. It seems to be less common in the midwest (especially the Rockies) but common again up and down the West Coast.

 

I know there are other spirochetal illnesses (i.e RMSF) that are more common in the Rockies than here, so no part of this country seems to be free of spirochetes.

 

Since I've had the pleasure of talking to people all over the country, I feel I better learn more about the geography of infectious disease

 

Dr. T

 

Yes, there are regional differences in tick-borne diseases. The better tick-borne labs are the best source of information about these differences. For instance, Igenex actually has different panels set up for the different U.S. regions.

See http://igenex.com click on "what to test for" and scroll down.

 

See also my post on testing suggestions on this forum, although it doesn't account for regional differences:

http://www.latitudes.org/forums/index.php?showtopic=7246

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I see a number of people from the West Coast posting here.

 

Is there any sense that "West Coast Lyme" is different than the classical Connecticut-Long Island "East Coast Lyme" ?

 

Bb-Lyme seems to be present in most of the east, as far south as mid Alabama, as far north as Maine, as far west as Illinois. It seems to be less common in the midwest (especially the Rockies) but common again up and down the West Coast.

 

I know there are other spirochetal illnesses (i.e RMSF) that are more common in the Rockies than here, so no part of this country seems to be free of spirochetes.

 

Since I've had the pleasure of talking to people all over the country, I feel I better learn more about the geography of infectious disease

 

Dr. T

 

Yes, there are regional differences in tick-borne diseases. The better tick-borne labs are the best source of information about these differences. For instance, Igenex actually has different panels set up for the different U.S. regions.

See http://igenex.com click on "what to test for" and scroll down.

 

See also my post on testing suggestions on this forum, although it doesn't account for regional differences:

http://www.latitudes.org/forums/index.php?showtopic=7246

 

I'm aware of the "East Coast" and "West Coast" panels that Igenex offers, and I apologize if I was unclear, I was asking if there is a sense that there is a clinical difference between Lyme on each coast. This has always been an issue in "American" vs. "European" Lyme, not sure if there is a consensus on whether there is a clinical difference among continents.

 

Dr. T

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