Go to pressconnects.com and see the guest viewpoint for today, Monday, April 12, 2010. My husband wrote this and I think he did a good job.
Of course, "the enemy" had to comment, but I wrote a rebuttal.
I told my husband I appreciate that he wrote it, but I highly doubt the message will get through.
In fact, this morning I happened to have an appointment with my new primary care doctor because I wanted to ask him for a prescription for oxycodone for the sometimes terrible pain I'm in.
Wow, what a party-liner he turned out to be! He wanted to know why I wanted a narcotic. I told him that oxycodone has, historically, been one of the few pain relievers that will break my pain that gets so bad I scream.
He told me that depression will cause pain so bad it makes a person scream. What I need is a psychiatrist and antidepressants.
I told him, "Thanks for your thoughts, but I won't be going to any psychiatrist. My pain is primary and due to chronic tick-borne disease."
Nope, I couldn't convince him that my pain is, in fact, caused by Lyme and not depression - but I expected that. I guess I was just hoping that Dr. Party-line would fill out a prescription for me because I did not know him prior to this appointment and didn't know how steeped in dogma he'd be.
Turns out, pretty steeped. He didn't even know that Lyme is a clinical diagnosis and the lab tests are no good.
Sigh, well - let's just hope that I don't experience the awful pain that makes me scream anytime soon. My LLMD won't prescribe pain relievers - he says have your primary do it.
Okeedokee.
Nothing like living on the edge.
- Lymelady
Posted by lymeladyinNY (Member # 10235) on :
Here is my husband's guest viewpoint:
Spring time is upon us and Lyme disease awareness should be, too.
Media regurgitate the same old advice: Tuck in your pant legs, use insect spray, check your body for ticks and use tweezers to remove any embedded tick.
Doctors will wave their hands with great authority and spew out the same party line -- that the disease is hard to catch and easy to cure with three weeks of generic antibiotics.
But there's often more to it than that. As the Centers for Disease Control and Prevention Web site explains, "several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. Most recommended tests are blood tests that measure antibodies made in response to the infection.
These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease."
Those negative results can be used by the insurance company, and doctor, to justify denial of treatment for this dreadful, crippling disease. The highly specialized blood testing required to support a clinical diagnosis for this disease costs more than $1,000 dollars and is not covered by any insurance plan.
The high out-of-pocket cost dissuades most patients from requesting it -- a dire mistake on the patient's part, only realized in hindsight, many miserable months later while sitting in their wheelchair.
Ticks are vampire bugs in that they drink blood to live. Ticks accumulate multiple species of bacteria and other pathogens. Patients can be infected, simultaneously, with a mix of disease organisms, all of which cannot be eradicated by a cookbook antibiotic.
In some cases proper treatment requires an assessment of multiple disease organisms, as well as timely application of multiple medications targeting each bug. Most doctors will not provide this type of care -- no way, no how, at no price whatsoever.
American doctors stand firm to the notion that Lyme disease is hard to catch, easy to cure. In Europe two leading vaccine makers that currently market vaccines for deadly influenza, rabies, pandemic flu, smallpox and several other serious diseases, are now developing vaccines for Lyme disease.
Why would such companies spend millions of investor dollars developing a vaccine for an "inconsequential disease" such as Lyme if in fact it was not such a devastating disease to the patient?
A pitiful situation in a nation that supposedly has the best medical care on Earth.
Posted by grandmother (Member # 19908) on :
I still think Steerites and any doctors with that viewpoint, should volunteer to be bitten by 1000 ticks, wait at least 48 hours and, IF they have a rash, they should get one pill. Works for me!
Posted by seibertneurolyme (Member # 6416) on :
Great article.
Sorry for your pain LymeLady. Finding a PCP is almost as hard as finding an LLMD.
Good for you for standing up to the doc. Tell your hubby to be careful or next thing he knows the docs will say he also is in denial and he needs a psychiatrist as well -- I have gotten that suggestion a few times -- the docs don't believe me when I insist that hubby is physically sick and not just depressed or anxious.
Bea Seibert
Posted by farraday (Member # 21494) on :
Well done! Good article.
I have not been successful in finding a PCP worth anything. I do have a pain doctor and she has been wonderful. Maybe you can find one. We asked the hospital pharmacist who prescribed many pain meds....that's how we found her!
I was on narcotics for years....even had a port installed in my chest so my husband could give me pain IV's twice a week for 6 years.
But after I had a "recovery" and went off the drugs, I learned some new ways to deal with pain. Now that I am relapsed and dealing with pain again, I find that I am better able to deal with it by the various meds and techniques I have learned. I do not at all want to return to the dependence I had on narcotics!
If you PM me I will send you my list of pain relief ideas. They don't always work entirely, but they do help a lot.
BTW, my psychiatrist said that many of her patients come to her because they are physically ill and their doctors cannot diagnose them so they refer them to her. She has taken great interest in lyme disease and thinks that some of her patients may have it.
Posted by lymeladyinNY (Member # 10235) on :
Bea, you made me laugh because my husband HAS been told he's crazy! A hospital psychiatrist who diagnosed me with "dependent personality disorder", "hysteria", "pseudo-seizures", etc. had a bit of an argument with my husband. He put in my record, "The husband seems to have shared delusions with the wife".
Thank God I have a wonderfully supportive husband and YOU are a wonderfully supportive wife!
- Julie
Posted by lymeladyinNY (Member # 10235) on :
Oh, and grandmother, my husband and I often joke about tying the "Steerites" up, slathering them in honey, pouring ticks on them, and then, when the ticks are embedded, squeezing each little body for maximum infecting effect!
My husband, for one, would never show any mercy at all to these bozos!
Posted by dmc (Member # 5102) on :
LymelinNY, he wrote a wonderful article. Thank you for sharing it.
Posted by Lymetoo (Member # 743) on :
That was great.. especially coming from a delusional man! Posted by lymeladyinNY (Member # 10235) on :
Thanks, guys! Now, today, I was interviewed by the paper and will have my face all over central NY soon - yikes!
The lady who interviewed me was absolutely shocked by my story.
I'm nervous to have my picture in the paper. I have insecurities about my looks and don't want anyone to see me.
Well, the deed is done. I'll let you know when it runs.
Posted by Tincup (Member # 5829) on :
You keep shaking that thing and getting their attention up there... like I know you can!
Good work and MUCH appreciated!
Posted by massman (Member # 18116) on :
lymelady your story + picture in the paper will spread the word even more !
Acting in spite of your fear is inspiring and will help us be heard + taken seriously. Posted by lymeladyinNY (Member # 10235) on :
Thank you! I think so many people are amazed and bewildered by the Lyme story that they don't quite know what to do with it.
I handed the interviewer a stack of pages and even offered "Under Our Skin" for her to watch. She declined, saying she would be very busy with everything I gave her.
She practically ran out of my house. I felt like I often do - a bit freakish - but, the story is true and unvarnished and, as we all know - ugly!
Most people run from ugliness. Wish I could!
- Lymelady
Posted by cp (Member # 25405) on :
Can you post a link to the paper when it comes out?
Posted by lymeladyinNY (Member # 10235) on :
Yes, cp, I will - or at least, I'll try! I'm totally not techno-savvy!
- Lymelady
Posted by Pinelady (Member # 18524) on :
OH My Goodness. I believe the commenter actually believe the ALDF and the IDSA.
"If you want results see the ALDF" Poor guy.
How can people be so obstinate when it comes to medical science?
I suppose he also listened to and still believes AIDS is a gay disease because they said so!
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[woohoo]](graemlins/woohoo.gif)
![[Smile]](smile.gif)