Who has seen under our skin? IDA is under investigation for antitrust!

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veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 6/7/2009 11:34 AM (GMT -7)   
you should read this 2nd paragraph. Wow guys! I went to the ER thurs thats why i havent been posting if you noticed hahaa. But im back halfway! Anyway my "Under our skin came " and I watched it last night. I am flabergasted. I almost cant speek. Bit I will say that I now know things that most people dont. Including some of the best doctors. this will change medicine as we know it once this is all revealed! Instead of Lyme being the last thing you will test for it will be the FIRST!!!!!!!!! I will be telling my infectious disease doc this as well as telling him your a nice man but the infectious disease society will loose respect for this! Quote me on this.
Also guys the infectious disease guidelines suggest that people telling you (infectious disease doctor) they have Lyme have been through some tramatic stressfull event and they are in a pschychosomatic state. That is why they routinely tell you you need coulceling. When I told my infectious disease doc I had Lyme he did bloodwork then when he was telling me my bloodwork was fine he then brought the nurse in closed the door, and he sat back and began to ask me if there was anything in my past that was bothering me or depressing me then i began to cry when a specific event was eventually rooted up from my past. He must have thoughht he was at the bottom of it that b-----d. then he made me say i was going to go to counceling. although he said well I dont believe that stress can make your knee swell up like this I think you have reighters syndrome. anyway I just wanted to let you guys know that this isnt a coincidence this is the way they are trained to react to Lyme.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

Post Edited (veromia333) : 6/7/2009 5:56:27 PM (GMT-6)


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/7/2009 5:00 PM (GMT -7)   
bump. Wondering what your routine IDA experience was like. Did they try to uncover some past tramatic event for you too.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/7/2009 6:26 PM (GMT -7)   
Years ago, the primary doctor I was going to could not explain why I kept getting sick and sent me to an infectious disease specialist. The infectious disease specialist ran more blood work, told me I was fine and sent me on my way without any explanation or desire to find out why I was constantly running fevers and always had swollen glands.

A year or two later I decided to go to an internist near my job and after having me show up time and time again with flu-like symptoms that took forever to go away, he sat me down and asked me if I ever heard of Chronic Fatigue Syndrome. I told him I was diagnosed with this many years earlier but always managed to bounce back so didn't think much of it. He then sent me to an infectious disease specialist who confirmed the CFIDS diagnosis and told me that he had seen many CFIDS patients who were more debilitated than his AIDS patients. Actually, he was quite sympathetic unlike the first one. He knew I was really sick but told me there was nothing he could do for me and referred to me a healing center that provides traditional and alternative medicine. Needless to say nothing ever worked and I continued to progressively get worse.

I was fortunate that most of the many doctors I've seen over the years believed I was genuinely sick but they couldn't figure out why and didn't know how to help me. Some tried more than others but nothing ever worked. Unfortunately, I went many years being misdiagnosed and not being properly treated.

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/7/2009 6:58 PM (GMT -7)   
Thank you for responding. I wish you were earlier diagnosed . But im glad you never were degraded in this way also, it is so hurtful. How are you now.

anyone else have a story complieing with the IDA guideline routine to present a lyme patient as a subject suffering from a post tramatic stress disorder instead of lyme.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/7/2009 7:19 PM (GMT -7)   
Well, the only thing I have experienced so far is that my insurance company said they would not pay for the LLMD to whom my PCP was referring me. They said I could not get an 'exception' unless there is no other specialist in my network. I told them I was on the 9 mo. waiting list of an LLMD who is covered by my ins, but that I needed to see someone sooner and my PCP referred me to the LLMD who does not take insurance. (I was asking about reimbursement)

The ins. rep insisted that there were other specialists in my network who could evaluate and treat me. She also stated there is no such 'specialst' as a lyme specialist. So I said, then please tell me of a specialist who can help me. She said that I needed to see an ID Dr. I told her that ID Drs do not evaluate or treat lyme and she insisted that is who I would need to see. This was ins, not a Dr, but she was snide w/ me and spoke to me as if I were an idiot.

She rattled off some names and I even made a list of ID drs in my network. I called each and every one of them asking if the Dr had experience in evaluating or treating chronic lyme and each and every office told me 'NO!' Some were quite snippy. ALL of them said that they do NOT test for Lyme.

I find this to be absurd, as an ID Dr should be an expert on infectious diseases!! And they certainly should NOT be turning patients away who are calling for help!
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/7/2009 7:43 PM (GMT -7)   
After everything I've heard about Infectious Disease specialists, hopefully I will never need to see another one again. It's disgraceful how people in need of help and medical attention are allowed to be treated. Most of us are so much sicker than many with other diseases and conditions that immediately evoke sympathy and understanding.

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/7/2009 8:31 PM (GMT -7)   
Have you seen under our skin? All of the panelists who wrote the infectious disease guidelines whom are a part of the society, are share holders in lyme patent companies, or are in direct recievence of monies from insurance companies to serve in court to bring doctors in front of the medical board to dismantel liscences, among other things they are in direct outcome of what happens in the impact of the lyme guidelines. They are now under investigation
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/8/2009 5:41 AM (GMT -7)   
I have Post-tramatic stress disorder which was diagnosed at least 10 years before I goy Lyme disease. I have been successfully treated for depression for years.

When I got Lyme disease - my first symptoms were severe depression and a swollen left knee. Because of my "history" E V E R Y doctor I saw jumped all over the conclusion that it was "all in my head". My knee was getting bigger and bigger, I started falling down stairs, my senses went nutso, I was seeing 5 of everything, my hearing was so acute it almost MADE ME CRAZY, I could smell things for days... to the point of nausea, all of my joints hurt and I was exhausted and could not get out of bed most days . I finally went to an orthopaedic doctor for my achy joints and swollen knees..... and I tested positive for Lyme disease! about a week before I got my test results I remember screaming at my psychiatrist that there was something " P H Y S I C A L L Y WRONG WITH ME!" Her response?, "Well I did have a patient with a brain tumor once." I mean - WTH??????? So I was put through the psychiatric ringer for 13 months before testing positive. Then it took me 4 more months to find a doctor willing to treat me.... and he handed me a rx for 200mg of doxycilcline..... again WTH????? I just went through 16 months of pure hell for a bottle of doxycicline?
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/8/2009 3:09 PM (GMT 0)   
Oh my god J. these are the memoirs of our plight. It is a routine we must outsmart. Rd has good tactics like going at disability for arthritis not lyme. Things like that. You should talk to a lawyer for emotional damage. I believe it is valid that is terrible J.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/8/2009 9:44 AM (GMT -7)   
I sure hope the medical community wakes up soon. What has been going on is disgraceful and there's so much unnecessary suffering. Whatever happened to the oath that doctors take? It's hard for me to believe that so many doctors who supposedly are so smart can be so downright ignorant and narrow minded. The arrogance is utterly appalling. Then there's the brave, compassionate llmd's who are attacked and risk their licenses in many cases just for trying to save us. How in the world can this be allowed to happen? I just hope that those responsible are eventually held accountable and end up paying for what they have done. How can one group of doctors have so much power. Will we have to wait until they pass on before any of this is truly acknowledged. WHY??

I apologize for the vent. I have so much pent up anger about what we all are going through.

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/8/2009 11:30 AM (GMT -7)   
Thats what this post is for!
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/9/2009 10:12 AM (GMT -7)   
The ID speciallist that I was sent to when it seemed that the doxy wasn't working, said that she couldn't be sure that it was Lyme, because on the Western Blot I tested positive for an old infection but not enough positive bands for a new infection. The more she spoke I was afraid she wasn't going to treat me at all, but basically said that she would treat it as Lyme for 28 days of the IV ceftriaxone and if it is Lyme that will kill it. She does not believe in chronic Lyme. She did at least agree that in 2005, the 10 days of 100 mg doxycline bid was probably not enough, but that if it is Lyme the IV cefriaxone will work. Afterward, on my follow up appt. on June 1, she would still not say that it was Lyme, and that if the symptoms return, that it was NOT Lyme, and will need to go to my PCP to be tested further for other causes. Don't worry, I will not fall for that!

The good thing is that in PA there are enough people infected that it is not that uncommon, but there are still some even here that go undiagnosed and untreated.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/9/2009 7:55 PM (GMT -7)   
ID MDs are in my 'dog house', as it is. Not only do they refuse to even test or evaluate for Lyme disease, they do not offer any advice or help. My father is on Cipro for enterobacter clocae, and he will have to be on it for life. He is and has been ill ever since his hip replacement became infected. His ID Dr has run all kinds of tests, found nothing, and said 'Sorry, there's nothing more I can help you with.'

This is sickening. If your patient continues to come to you w/ the same complaints because he is SICK, you need to FIND AN ANSWER, even if it's difficult and inconvenient, and even if you need to search for a referral for him to see another kind of Dr!

for the kind of money that they make off their patients, this is inexcusable and very negligent on these Drs parts!
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/9/2009 8:13 PM (GMT -7)   
Do you guys know how in other countries if America decides to help someones medical issue that america believes the country is neglecting and they are, that when the country finds out america is steping in they suddenly become embarrassed and step in and take over treatment of their countryman to prove to the world that they are capable of curing their own people. I wonder if the same principle could be implemented towards Lyme. Like a country that is not dangerous but doesnt exactly like us would spread the news that america is infected w Lyme and doctors are ignoring. And what pieces of crap they are.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Weary1
Regular Member


Date Joined Oct 2006
Total Posts : 127
   Posted 6/10/2009 1:06 PM (GMT -7)   
If you know anyone in southern Wisconsin, Northern Illinois, Western Michigan, Southern Indiana....please tell them about our Under Our Skin event in Chicago on June 28th. Dr. J from the movie and Mandy will be special guests and doing a special 1 hour Q &A right after the movie also. We are really trying to get MD's out to see this too.

I agree this movie is incredibly powerful and everyone needs to see it!!!!!
 
More info at www.chicagolyme.com


www.chicagolyme.com
 
"Greater things are yet to come and greater things are still to be done in this city" - Chris Tomlin
 

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