I NEED TO VENT: Doctors -- especially "experts"!!!!

[maryok]

Please forgive me but if I don't vent I'm going to absolutely EXPLODE! Yet another experience with a so-called "expert" has made me see very clearly that the chief issue with Morgellons is NOT "delusions of parasites" in patients -- but instead "delusions of grandeur" within the medical community.

Afraid this is going to be a rather LONG post ....

My latest episode, which some of you may have read about: quite by accident, found out about a "parasite specialist" and went to see him two weeks ago. Coincidentally, two days later, while waiting to hear about my test results, I learned about Dr. Harvey's research into Morgellons -- and his success with treating it. So naturally, I forwarded this information to my doctor.

Last week I got a call from him, expressing his displeasure with being asked to look at another doctor's protocol. Turns out, what REALLY sent him over the edge was my suggestion that he contact Dr. Harvey about any new developments he might have found. DO YOU KNOW WHAT MY DOCTOR ACTUALLY SAID TO ME?!! Something along the lines of, "I'm a well-known NY expert and don't think I should be the one calling HIM. If Harvey wishes to contact ME, I'd be "willing" to talk to him..."

My reply to him: "Fat chance of that, doctor." I informed him that Dr. Harvey is the ONLY doctor who has done extensive research on Morgellons -- and the ONLY doctor who's actually been successful in treating it. I also let him know that Dr. Harvey is ALSO an "expert," having worked for NASA -- and that he has a VERY long waiting list of patients who want to see him (ie, he has more important things to do with his time than kiss your butt.) In other words, don't count on Dr. Harvey contacting you....

My chief outrage: he was supposed to get back to me the next day to give me my test results. He didn't -- and hasn't in the days following. Now it's almost two weeks since I've seen him and, he STILL hasn't given me my g-d test results. So I just called his office today and told them I could not wait any longer -- to please fax my test results to my primary care doctor so I COULD GET TREATED!!! I'm sure my regular old non-expert doctor will have no problem prescribing Dr. Harvey's protocol.

Thanks for letting me get this out -- I feel so much better!!!! Have I told you lately how much I love you guys?!!

[maryok]

Please forgive me but if I don't vent I'm going to absolutely EXPLODE! Yet another experience with a so-called "expert" has made me see very clearly that the chief issue with Morgellons is NOT "delusions of parasites" in patients -- but instead "delusions of grandeur" within the medical community.

Afraid this is going to be a rather LONG post ....

My latest episode, which some of you may have read about: quite by accident, found out about a "parasite specialist" and went to see him two weeks ago. Coincidentally, two days later, while waiting to hear about my test results, I learned about Dr. Harvey's research into Morgellons -- and his success with treating it. So naturally, I forwarded this information to my doctor.

Last week I got a call from him, expressing his displeasure with being asked to look at another doctor's protocol. Turns out, what REALLY sent him over the edge was my suggestion that he contact Dr. Harvey about any new developments he might have found. DO YOU KNOW WHAT MY DOCTOR ACTUALLY SAID TO ME?!! Something along the lines of, "I'm a well-known NY expert and don't think I should be the one calling HIM. If Harvey wishes to contact ME, I'd be "willing" to talk to him..."

My reply to him: "Fat chance of that, doctor." I informed him that Dr. Harvey is the ONLY doctor who has done extensive research on Morgellons -- and the ONLY doctor who's actually been successful in treating it. I also let him know that Dr. Harvey is ALSO an "expert," having worked for NASA -- and that he has a VERY long waiting list of patients who want to see him (ie, he has more important things to do with his time than kiss your butt.) In other words, don't count on Dr. Harvey contacting you....

My chief outrage: he was supposed to get back to me the next day to give me my test results. He didn't -- and hasn't in the days following. Now it's almost two weeks since I've seen him and, he STILL hasn't given me my g-d test results. So I just called his office today and told them I could not wait any longer -- to please fax my test results to my primary care doctor so I COULD GET TREATED!!! I'm sure my regular old non-expert doctor will have no problem prescribing Dr. Harvey's protocol.

Thanks for letting me get this out -- I feel so much better!!!! Have I told you lately how much I love you guys?!!

[standswfist]

Out of curiosity, any of these "doctors" run a full panel blood test?

[standswfist]

Out of curiosity, any of these "doctors" run a full panel blood test?

[Franky]

Mary sorry to hear of your situation with your doctor. Myself and my friend pretty much went through the same a few years ago in NYC as well. Things haven't changed unfortunately. Its usually their way or the highway.

[Franky]

Mary sorry to hear of your situation with your doctor. Myself and my friend pretty much went through the same a few years ago in NYC as well. Things haven't changed unfortunately. Its usually their way or the highway.

[ladycolorado]

yeah that is the crux of it. if lucky one might have a good family doctor or general practitioner who is openminded but the "referral" you get is another thing altogether. any doctor can prescribe oral antibiotics, i do not even see why a referral is necessary. my er experience was so bad and i was mishandled and humiliated out in the main hall that i waited and did my best to be as patient as could in my wait to see Dr. H. i know that a dop diagnosis make one the equivalent of an untouchable in India, they will do nothing except want to feed a person psych drugs. it was very hard for me to wait, but what i had to do. now my dughter has it possibly trying to start in her ears, but followed bubbas advice sent her back to exes with some things to help. told my kid not to mention anything about morgellons disease, but just have regular pediatrician have a look and give drops for an ear infection if she has one. i also warned her off sugar, she is so good, told her if have what i have that it is way can spread that the sugar feeds the disease. i also bout her sugar free cholate to pig on when she visited, think had mallitol in it. she was so good about it all, "said mommy the school has sugar free kit-kat". for ten and a half she is wiser then many adults. i told her would help buy me time in her waiting to see DR. H. syphillus was once thought to be a mental disorder too, now they know that antibiotics help. we just have to wait for these folks to see that the earth is round, lol. might check with the regular doctor he might be nice give you some oral antibiotics from dr. h.'s protocols. (LC)

[ladycolorado]

yeah that is the crux of it. if lucky one might have a good family doctor or general practitioner who is openminded but the "referral" you get is another thing altogether. any doctor can prescribe oral antibiotics, i do not even see why a referral is necessary. my er experience was so bad and i was mishandled and humiliated out in the main hall that i waited and did my best to be as patient as could in my wait to see Dr. H. i know that a dop diagnosis make one the equivalent of an untouchable in India, they will do nothing except want to feed a person psych drugs. it was very hard for me to wait, but what i had to do. now my dughter has it possibly trying to start in her ears, but followed bubbas advice sent her back to exes with some things to help. told my kid not to mention anything about morgellons disease, but just have regular pediatrician have a look and give drops for an ear infection if she has one. i also warned her off sugar, she is so good, told her if have what i have that it is way can spread that the sugar feeds the disease. i also bout her sugar free cholate to pig on when she visited, think had mallitol in it. she was so good about it all, "said mommy the school has sugar free kit-kat". for ten and a half she is wiser then many adults. i told her would help buy me time in her waiting to see DR. H. syphillus was once thought to be a mental disorder too, now they know that antibiotics help. we just have to wait for these folks to see that the earth is round, lol. might check with the regular doctor he might be nice give you some oral antibiotics from dr. h.'s protocols. (LC)

[beverlybdmd]

I feel so sad when I think about all the games that so many of us are forced to play! To coddle our doctors stupid egos; to protect the sensibilities our family members who just don't really understand; to manipulate the insurance into paying for the care that we deserve and need, and have paid our premiums in order to receive: The "friends" who are worried or anxious about their own welfare and our contagiousness, and ultimately chose to avoid us for their own safety.

There is too much artifice and role playing necessary at times, it seems, and an awful lot is due to the "stigma" that the medical community has laid upon us. They sure aren't helping us, are they???

-Beverly BDMD

[beverlybdmd]

I feel so sad when I think about all the games that so many of us are forced to play! To coddle our doctors stupid egos; to protect the sensibilities our family members who just don't really understand; to manipulate the insurance into paying for the care that we deserve and need, and have paid our premiums in order to receive: The "friends" who are worried or anxious about their own welfare and our contagiousness, and ultimately chose to avoid us for their own safety.

There is too much artifice and role playing necessary at times, it seems, and an awful lot is due to the "stigma" that the medical community has laid upon us. They sure aren't helping us, are they???

-Beverly BDMD