Re: OT: How Lymies see themselves (was) Herx reactions (was) Re: OT:

[Guest guest]

I understood it so well that I never went when I was o sick

Kindly Marie

To: Lyme_and_Rife Sent: Thursday, April 26, 2012 10:15 PMSubject: OT: How Lymies see themselves (was) Herx reactions (was) Re: OT:

You're right Lena,We have to be constantly vigilant. For years doctors could find nothing wrong with me, and then I was diagnosed by a friend with a pendulum, who also told me what doctor to see. My doctor estimated I had LD at least 30 years in 2000. Doctors can keep only so much information at the top of their minds. If they haven't thought about something for a while, it gets buried. It all depends what journals they read and what lectures they attend ... (usually sponsored by Big Pharma!)And Barbara--I agree with you! We're much safer if we can stay out of hospitals!Khaya> > > hi jim,> > it's not just lyme the e.r. doesn't know about. in 2000 i went to the > e.r. with c. difficil and twice they dx as the flu. one arrogant dr > said he's never wrong and 'knew' it was the flu. well, a specialist > in comm. disease was called in and said it was c.diff. i had a 104+ > temp, could keep nothing in/down and they were going to send me home. > all my symptoms and history 'screamed' c.diff. and they couldn't > figure it out.> > then the benzo acute w/d symptoms. classic. yet they didn't know???> > the e.r. is where they get these types of things more than a g.p

would > see. i know when i confronted the head of the e.r. about the 2 > misdiagnoses with the c.diff., he wanted to defend his dr. i kept > repeating the question as to why they didn't know these classic > symptoms, finally he said, 'i don't know, but will find out.' i said > 'thank you.' they just didn't want to accept they missed it. i just > wanted them not to miss it on the next patient. they did reverse the > charge on one of the visits.> > i told my husband i would never go back to this local hospital-the one > where they thought i was a psych patient. i will go the 2 hrs to the > next hospital. but i will be dying before i go again.> > barbara

[Guest guest]

lena,loved dr. welby.  we watched it every wk, then the reruns also.  they did have dr. consultants, but to be fair, they didn't have as many disease to keep up with then.  i watch mystery diagnosis a lot and get so upset because the g.p. will tell the patient and/or parent, lets give it some time, and 2 yrs later---they are still telling them the same thing--unbelievable. why not refer them out if they don't know.

lots of times it is the patient/parent that finds it on the internet and pursues a specialist.  that is what i did.  also, it is important to give the dr ALL the symptoms you can think of.  anything to trigger a thought/memory.  the dr. needs as much info as he can get to figure things out.  even with it, they seldom get it right. they don't think out of the box. 

drs are not trained to problem solve, but to give drugs to treat symptoms, or cut it out. as the tv commercials say, 'talk to your dr about if ......is right for you.'  they are not much more than drug pushers.  but patients want the drugs for a quick fix so are part of the problem. 

the morning i went through the acute w/d for benzos, i remember as the convulsions were coming on, tingling, shaking, and some pain would start in my feet and hands and move up until it engulfed my body and i convulsed.  i thought it was all this lyme stuff and those attacks.   

i was trying to verbalize the symptoms to help the paramedics/dr  diagnose.  but it just made me look crazier. i guess the truth of what is happening to us sounds crazy to them.  i guess in this situation i gave too many symptoms, overwhelming them, so 'nuts' was easier to dx.   once they decide your 'nuts', that seems to stick.

barbara

 

I understood it so well that I never went when I was o sick

Kindly Marie

To: Lyme_and_Rife Sent: Thursday, April 26, 2012 10:15 PM

Subject: OT: How Lymies see themselves (was) Herx reactions (was) Re: OT:

 

You're right Lena,We have to be constantly vigilant. For years doctors could find nothing wrong with me, and then I was diagnosed by a friend with a pendulum, who also told me what doctor to see. My doctor estimated I had LD at least 30 years in 2000.

Doctors can keep only so much information at the top of their minds. If they haven't thought about something for a while, it gets buried. It all depends what journals they read and what lectures they attend ... (usually sponsored by Big Pharma!)

And Barbara--I agree with you! We're much safer if we can stay out of hospitals!Khaya

> > > hi jim,> > it's not just lyme the e.r. doesn't know about. in 2000 i went to the > e.r. with c. difficil and twice they dx as the flu. one arrogant dr > said he's never wrong and 'knew' it was the flu. well, a specialist

> in comm. disease was called in and said it was c.diff. i had a 104+ > temp, could keep nothing in/down and they were going to send me home. > all my symptoms and history 'screamed' c.diff. and they couldn't

> figure it out.> > then the benzo acute w/d symptoms. classic. yet they didn't know???> > the e.r. is where they get these types of things more than a g.p

would > see. i know when i confronted the head of the e.r. about the 2 > misdiagnoses with the c.diff., he wanted to defend his dr. i kept > repeating the question as to why they didn't know these classic

> symptoms, finally he said, 'i don't know, but will find out.' i said > 'thank you.' they just didn't want to accept they missed it. i just > wanted them not to miss it on the next patient. they did reverse the

> charge on one of the visits.> > i told my husband i would never go back to this local hospital-the one > where they thought i was a psych patient. i will go the 2 hrs to the > next hospital. but i will be dying before i go again.

> > barbara

[Guest guest]

Hi Barbara,At present, I don't even have a prime care, (mine retired, and then her replacement left) but the retired one was a nurse practitioner with script privileges and could order tests. NPs are good because they know what they don't know and are more willing to refer. Of course, the specialists aren't often knowledgeable, but at least there is a pathway to more info.When I'm feeling lucid, I try to write down everything that was happening when I was in the midst of a bad herx or attack or flare. I can better express it, I sound more rational, and it's on the record, so if I'm in pain and completely inarticulate or have forgotten what things worked, there's something written down. It can come in handy.Also, I find it curious that 'House', the character who's a master at medical problem-solving, must be portrayed as a seriously flawed, addicted doctor: almost an outlaw. Just thinking outside the box should make him outlaw enough, but no, to appease the medical audience, and the status quo, this guy must be on the brink of total discredit. Hmmmm.I enjoy Mystery Diagnosis, mostly because I usually know the answer before it comes up. A sad state of affairs.Be well,Léna lena,loved dr. welby. we watched it every wk, then the reruns also. they did have dr. consultants, but to be fair, they didn't have as many disease to keep up with then. i watch mystery diagnosis a lot and get so upset because the g.p. will tell the patient and/or parent, lets give it some time, and 2 yrs later---they are still telling them the same thing--unbelievable. why not refer them out if they don't know. lots of times it is the patient/parent that finds it on the internet and pursues a specialist. that is what i did. also, it is important to give the dr ALL the symptoms you can think of. anything to trigger a thought/memory. the dr. needs as much info as he can get to figure things out. even with it, they seldom get it right. they don't think out of the box. drs are not trained to problem solve, but to give drugs to treat symptoms, or cut it out. as the tv commercials say, 'talk to your dr about if ......is right for you.' they are not much more than drug pushers. but patients want the drugs for a quick fix so are part of the problem. the morning i went through the acute w/d for benzos, i remember as the convulsions were coming on, tingling, shaking, and some pain would start in my feet and hands and move up until it engulfed my body and i convulsed. i thought it was all this lyme stuff and those attacks. i was trying to verbalize the symptoms to help the paramedics/dr diagnose. but it just made me look crazier. i guess the truth of what is happening to us sounds crazy to them. i guess in this situation i gave too many symptoms, overwhelming them, so 'nuts' was easier to dx. once they decide your 'nuts', that seems to stick. barbara I understood it so well that I never went when I was o sick Kindly Marie To: Lyme_and_Rife Sent: Thursday, April 26, 2012 10:15 PM Subject: OT: How Lymies see themselves (was) Herx reactions (was) Re: OT: You're right Lena,We have to be constantly vigilant. For years doctors could find nothing wrong with me, and then I was diagnosed by a friend with a pendulum, who also told me what doctor to see. My doctor estimated I had LD at least 30 years in 2000. Doctors can keep only so much information at the top of their minds. If they haven't thought about something for a while, it gets buried. It all depends what journals they read and what lectures they attend ... (usually sponsored by Big Pharma!) And Barbara--I agree with you! We're much safer if we can stay out of hospitals!Khaya > > > hi jim,> > it's not just lyme the e.r. doesn't know about. in 2000 i went to the > e.r. with c. difficil and twice they dx as the flu. one arrogant dr > said he's never wrong and 'knew' it was the flu. well, a specialist > in comm. disease was called in and said it was c.diff. i had a 104+ > temp, could keep nothing in/down and they were going to send me home. > all my symptoms and history 'screamed' c.diff. and they couldn't > figure it out.> > then the benzo acute w/d symptoms. classic. yet they didn't know???> > the e.r. is where they get these types of things more than a g.p would > see. i know when i confronted the head of the e.r. about the 2 > misdiagnoses with the c.diff., he wanted to defend his dr. i kept > repeating the question as to why they didn't know these classic > symptoms, finally he said, 'i don't know, but will find out.' i said > 'thank you.' they just didn't want to accept they missed it. i just > wanted them not to miss it on the next patient. they did reverse the > charge on one of the visits.> > i told my husband i would never go back to this local hospital-the one > where they thought i was a psych patient. i will go the 2 hrs to the > next hospital. but i will be dying before i go again. > > barbara

[Guest guest]

hi lena,my last prime care was somewhat useless.  she knew nothing of lyme and asked me how to spell babesia.  i also have found the n.practitioner or dr. assist. better than the dr.

yes on the writing down things.remember the movie 'patch adams' with robin williams.  if you haven't seen that one watch it.  he had the heart of what medicine should be like.  in med school he was very unconventional.  they tried to get him out of med school, one of the charges being 'excessive happiness'.  he really pushed their traditional buttons and they wanted him gone.  but he persisted his position and won.  he went on to establish a clinic/hospital with a waiting list of drs wanting to work with him. true story.  so there are some out there that care.

my sister had a friend who's husband was a dr.  he was brilliant as a dr. and quite caring also.   he did medical missionary work on a regular basis.   he discovered a tumor on my sister's pituitary gland, saving her life.  found a surgeon for my mom to permanently remove a 'wart' growth on her thumb which others failed to do in 20 yrs.   he dismissed my drs. idea that my symptoms were hormonal and ordered tests and referrals and started the journey ending in the discovery of my lyme.  

but he ended up going to jail.  after his wife 'mysteriously' died of a heart attack, my sister discovered, through their exchange student, he had cameras in the bathrooms with many videos of young women on his computer.  they lived on the water and many young people from church came to their home. 

now, my sister's son was best friends with his son, who told my sister of fights his parents were having.  he had started his wife on heart pills.  no proof, but most suspect he gave his wife something other than heart pills.  he had her cremated right after death. we think she found out about his video 'hobby'.  hmmmm.

oh, and he was having young women in his practice come back for unwarranted monthly breast exams.  so, he did settlements with the young women on the videos, liquidated, went to jail, lost his license and moved to ca. there were so many unbelievable things that went on, so involved in intrigue,  someone should really do a movie, or at lease a law and order episode.

what a waste of a wonderful medical mind.  i guess brilliant drs don't make good ones.  i think i would rather have patch adams and his 'excessive happiness'.

barbara

 

Hi Barbara,At present, I don't even have a prime care, (mine retired, and then her replacement left) but the retired one was a nurse practitioner with script privileges and could order tests. NPs are good because they know what they don't know and are more willing to refer. Of course, the specialists aren't often knowledgeable, but at least there is a pathway to more info.

When I'm feeling lucid, I try to write down everything that was happening when I was in the midst of a bad herx or attack or flare. I can better express it, I sound more rational, and it's on the record, so if I'm in pain and completely inarticulate or have forgotten what things worked, there's something written down. It can come in handy.

Also, I find it curious that 'House', the character who's a master at medical problem-solving, must be portrayed as a seriously flawed, addicted doctor: almost an outlaw. Just thinking outside the box should make him outlaw enough, but no, to appease the medical audience, and the status quo, this guy must be on the brink of total discredit. Hmmmm.

I enjoy Mystery Diagnosis, mostly because I usually know the answer before it comes up. A sad state of affairs.

Be well,Léna  

lena,loved dr. welby.  we watched it every wk, then the reruns also.  they did have dr. consultants, but to be fair, they didn't have as many disease to keep up with then.  i watch mystery diagnosis a lot and get so upset because the g.p. will tell the patient and/or parent, lets give it some time, and 2 yrs later---they are still telling them the same thing--unbelievable. why not refer them out if they don't know.

lots of times it is the patient/parent that finds it on the internet and pursues a specialist.  that is what i did.  also, it is important to give the dr ALL the symptoms you can think of.  anything to trigger a thought/memory.  the dr. needs as much info as he can get to figure things out.  even with it, they seldom get it right. they don't think out of the box. 

drs are not trained to problem solve, but to give drugs to treat symptoms, or cut it out. as the tv commercials say, 'talk to your dr about if ......is right for you.'  they are not much more than drug pushers.  but patients want the drugs for a quick fix so are part of the problem. 

the morning i went through the acute w/d for benzos, i remember as the convulsions were coming on, tingling, shaking, and some pain would start in my feet and hands and move up until it engulfed my body and i convulsed.  i thought it was all this lyme stuff and those attacks.   

i was trying to verbalize the symptoms to help the paramedics/dr  diagnose.  but it just made me look crazier. i guess the truth of what is happening to us sounds crazy to them.  i guess in this situation i gave too many symptoms, overwhelming them, so 'nuts' was easier to dx.   once they decide your 'nuts', that seems to stick.

barbara

  I understood it so well that I never went when I was o sick

Kindly Marie

To: Lyme_and_Rife Sent: Thursday, April 26, 2012 10:15 PM

Subject: OT: How Lymies see themselves (was) Herx reactions (was) Re: OT:   You're right Lena,

We have to be constantly vigilant. For years doctors could find nothing wrong with me, and then I was diagnosed by a friend with a pendulum, who also told me what doctor to see. My doctor estimated I had LD at least 30 years in 2000.

Doctors can keep only so much information at the top of their minds. If they haven't thought about something for a while, it gets buried. It all depends what journals they read and what lectures they attend ... (usually sponsored by Big Pharma!)

And Barbara--I agree with you! We're much safer if we can stay out of hospitals!Khaya > > > hi jim,> > it's not just lyme the e.r. doesn't know about. in 2000 i went to the

> e.r. with c. difficil and twice they dx as the flu. one arrogant dr > said he's never wrong and 'knew' it was the flu. well, a specialist > in comm. disease was called in and said it was c.diff. i had a 104+

> temp, could keep nothing in/down and they were going to send me home. > all my symptoms and history 'screamed' c.diff. and they couldn't > figure it out.> > then the benzo acute w/d symptoms. classic. yet they didn't know???

> > the e.r. is where they get these types of things more than a g.p would > see. i know when i confronted the head of the e.r. about the 2 > misdiagnoses with the c.diff., he wanted to defend his dr. i kept

> repeating the question as to why they didn't know these classic > symptoms, finally he said, 'i don't know, but will find out.' i said > 'thank you.' they just didn't want to accept they missed it. i just

> wanted them not to miss it on the next patient. they did reverse the > charge on one of the visits.> > i told my husband i would never go back to this local hospital-the one > where they thought i was a psych patient. i will go the 2 hrs to the

> next hospital. but i will be dying before i go again. > > barbara