Tell us how you survived a personal health crisis. What got you through a battle with cancer or a tough recovery after a serious injury? Perhaps you've learned to manage a chronic condition like diabetes or Parkinson's disease. Or maybe you're coping with mental health issues.
Take us from the onset of your illness to the day you turned a crucial corner. What did you learn about your physical and emotional strengths? Were there people in your life that buoyed you with support or guidance? What was your medical care like? We'll run the best of our submissions throughout 2007.
Submission Guidelines: Your essay should be: a) An original piece, b) 850-900 words, and c) Personal in tone. It should not be framed as a response to a Newsweek story or another Newsweek reader essay. Submissions must not have been published elsewhere.
Please include your full name, phone number, e-mail address and home address with your entry. We are fully aware of the time and effort involved in preparing an essay, and each manuscript is given careful consideration. Please allow two months for your submission to be considered.
Email submission to: [email protected] Put in subject line: HealthTriumphs (Be sure to include your name, phone number and e-mail address.)
Posts: 621 | From US | Registered: Jun 2006
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bettyg
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posted
up; looks interesting to me; reminder for later in the week to consider doing!
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Way to GO! Your story was succinct, informative and moving. You were able to write of your own challenges and also include the rest of us Lymies and what we face daily.
I loved how you flowed into the difficulties we experience because of the current political climate regarding testing and treatment of Lyme.
I don't know how you could include any more information given the word restraints, but if you could, I would include coinfections and also that major diseases like Parkinson's and MS are often misdiagnosed and are actually Lyme disease.
However, your "Time" was just great and I applaude you for being able to include so much information without sounding maudlin or whiny.
Many kuddos and much appreciation!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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David95928
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posted
Thanks, Janet. It still may be too long so I'll have to do a word count and see where it stands.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
i might give this a shot too, but it'll take a while to get an essay out.
david. it's difficult to write about lyme disease. those of us who have it, and people close to us who have taken the time to research and understand it, will understand what you are writing about. but, imagine, before you got lyme disease, did you know anything about it? at that time, would you have understood what the heck you are writing about now?
it's difficult to write about lyme disease without spending 1000 words just listing symptoms, and then turning the rest into a discussion about the political troubles. it's important, but i'm just thinking that the newsweek my turn asked that the essay be "personal" and they may read this as a little less personal. somehow the political has to be weaved in without sounding too much such.
Posts: 98 | From San Francisco | Registered: Oct 2006
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bettyg
Unregistered
posted
David, KUDOS! OUTSTANDING!
i'll have to come back later today to read it again.
couple of area IF you can expand on; getting SSDI, social security disablity insursance benefits is NO piece of cake! took me 5 years! Rarely approved on 1st step, 1st claim.
Expand on how many folks have gone bankrupt, lost their homes, been fired due too much absence from work, etc.
one area i'd love to see you edit is the long list of symptoms; break them up letting folks get a better feel of ALL we go thru. excellent examples david!
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MagicAcorn
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posted
I think it is perfect the WAY IT IS!
It is your story told in your way and that is the best - adding other folks points will change everything.
I wouldn't add anything to your story you do not have personal experience with. They want an interesting personal story not an educational piece.
Your personal story is great, I'm not so sure Newsweek would be interested in your politial point of veiw with the story, it would be great if they would like both!
Give it a go!
Thank you for having such a voice!
Posts: 663 | From NH USA | Registered: Sep 2004
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posted
David, Thank you so much for your impressive letter and heartiest congratulations on recovering your health and your remarkable career success. You went from being a doctoral student to full professor in four years? Is that at all typical in your field or your university? I believe it would generally take more like 12 years. With such results from ABX treatment this news could certainly shake up the academic world. Now IDSA really will have reason to worry. Everyone who uses his/her mind to make a living will demand ABX . But probably you were just brilliant before you became ill. Anyway, thanks very much for sharing your story and for spreading the word!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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David95928
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posted
FFWW, Actually, I completed doctoral study in 1996, changed institutions in 2002 on condition of being appointed Associate Professor and being given two years credit toward promotion, then went up for early promotion to full professor in 2004. So it was still kind of fast but not like it sounded.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
Really amazing that you could continue being productive academically while you were dealing with those debilitating symptoms! Could you tell us more about how you did it? How you keyboarded/wrote for example. The details will no doubt interest the jury selecting the winner of the contest as well.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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David95928
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FFWW, It was really difficult. I actually lost a year working on my dissertation because I could not focus well enough to conceptualize well or write. After that, I really struggled but managed to get enough publications to be attractive to a teaching university, as opposed to a Research 1. Plus, I'm a strong teacher which helped me compensate.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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David95928
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posted
I think the added mention of high-profile Lyme patients who have gone public about long-term ABX helping them is good.
If you could thoroughly describe how you managed to work around/through the tendon problems it would be enlightening to large numbers of readers as well as inspiring. I can see you struggling with the towel and the door. I am still having trouble visualizing how you actually got your work done. Was your partner a big part of the solution? Dragon-dictate? Lots of breaks? Working things through in your head instead of writing drafts?
Did your thyroid problems lead to hoarseness at some point and affect your ability to lecture? If so, what were your some of your coping strategies?
Am I being clear in what I am suggesting?
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Andie333
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posted
David,
It looks good, but (not to be too picky) you're still 100+ words over their maximum.
From what I know of the column, I know they adhere pretty strictly to those parameters.
I was amazed that your journey and mine are so similar!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Hi David, It's a good start. Too me it is still too heavy on symptom lists and too light on how you felt, what you learned, how you got through, the turning point, who helped you...
Let's make sure we get some Lyme stories published. Make sure the word count is correct.
david, i showed below some changes i'd make since i'm a former secretary for 26 years typing LEGAL agreements, and know 1st hand of breaking up long solid text makes folks see/read what they may have overlooked before!
How does this revision look?
david, whenever anyone does a revision posting the entire contents, it's very helpful to us, the readers, to BOLD anything new you added we so can tell at a quick glance what has been added/deleted! it saves us precious time ok; i thank you!
Over the next ten years a number of other health problems emerged and by 2002 I was diagnosed with:
asthma, chronic bronchitis (possibly COPD), benign prostatic hypertrophy with a PSA of 4, vertigo of unknown etiology, peripheral neuropathy, various hormonal abnormalities, frequent aphthous ulcers, angular stomatitis, and arthritis in the spine.
Undiagnosed but present were increased problems with memory, concentration, and orientation, severe fatigue, low grade fevers with chills, and tendon pain so severe I had trouble with such simple tasks as opening doors and picking up a towel.
david, but separating the long list of symptoms; things stand out that get buried in long solid block of text.
In addition, I would get sudden, severe pain that would end just as abruptly and strange sensations such as itching muscle pectoral muscles. I had been to numerous ``best docs'' who treated me symptomatically if they didn't conclude that I was, simply, crazy.
Many in my situation have had far greater difficulties both in the area of securing treatment and in outcome. ....david, you don't need the been in there... have been had far!
The professors, who incidentally don't need to cure anyone of anything to earn a living and progress professionally, hold that Lyme disease can be cured with thirty days of antibiotics. If, after such treatment, the individual still has symptoms s/he has, ta-da!!! ``post-Lyme syndrome.''
This purported condition has no known scientific explanation and is used to rationalize denying treatment to people with a life altering and many times fatal illness .
david, i changed your sometimes to MANY times as we have many deaths; not just a few lyme deaths!
I refer to it as a purported condition because, if the professors had any belief that they had identified a new condition to exploit for prestige and personal gain, they would be all over it, like flies on molasses, trying to get ``discoveries '', publications, and licensing agreements.
However, the inconvenient fact that people are recovering through the use of long-term antibiotics, some of them high profile individuals like author Amy Tan and musician Daryl Hall who have gone public, gives me hope that we will prevail.
hope this helps you david!
but now you're like me; i'm 100 words over; what is NOT IMPORTANT/CRITICAL to my article! uffda
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timaca
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posted
Thanks for this link. I did send a story. Just shy of 900 words.
David, I liked your story as well. I hope they choose a lyme story.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
timaca, i hope you will share your story with us here too; we're rooting for a lyme patient story to WIN!!
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timaca
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Hi Betty~ Here's my story....Timaca
My illness started in the fall of 2003. Dizziness, tachycardia and a 30 hour bout of extreme fatigue sent me to my physician and cardiologist. Iron deficiency anemia was the only problem identified.
I continued to worsen with nerves that burned, sparked and crawled all over my body. My neck creaked upon moving, my muscles hurt and spasmed, I was dizzy and felt off balance. The fatigue hit again. Ears rang, internal vibrations started, joints hurt, stomach burned, heart raced, eyes blurred and stung.
More doctors visits. No answers. In all, 17 doctors were consulted, including the specialists at Mayo Clinic Arizona.
I went from being a woman who participated in strenuous athletic events (like 17 mile races over 13,000 foot mountain passes and 7 day backpacking trips in the Grand Canyon) to someone who had to lean against walls for support while standing. Indeed, I had to rest after taking my morning shower. All my involvement in community activites stopped. Any kind of full time work was out of the question.
Desperate to find answers, I turned to the internet. Computer searches were limited to 10 minutes at a time due to the foggy brain and extreme fatigue.
I stumbled across the possibility of Lyme disease and found my way to Dr. F at Columbia University Medical Center, NY. www.columbia-lyme.org I had been ill for 1 1/2 years at this point in time.
After a 2 day evaluation, 16 tubes of blood and a brain spect, he decided Lyme disease was the likely cause of my illness and suggested IV antibiotics due to the CNS involvement.
He saved my life. After 4 1/2 months of IV and oral antibiotics I came back to the land of the living. He, along with several other doctors (Dr. L, Dr. B, Dr. B, Dr. L, Dr. S, and Dr. B) gave me hope when I had none. When I had medical crises these doctors were on the phone helping me. They are angels on earth.
Dr. B a specialist in iron disorders in the state of Alabama worked with me to correct my iron issues. He cared enough to call me on a Friday evening, well past his working hours.
Dr. S, a C. difficile expert in Washington, gave me hope when 11 months of C. difficile left me hopeless. She promised to help me overcome the disease. She kept her word, even calling me on a Sunday, from a GI conference that she was attending, with a possible solution (which thankfully, worked).
Dr. L called me from New York within 10 minutes of learning of the fungal infection in my picc line. He also called upon learning of my ER visit due to extended tachycardia, subsequent rash on my abdomen, followed by my third bout of C. difficile. His opening line of ``You're having a really bad week, aren't you?'' let me know he understood the hellishness of my issues.
A serious illness can strip you of hope. These doctors gave me hope. My faith played a huge role too. I had always been a person of faith, but the idea of God being a good God was questioned as I was laid out in severe pain. ``How can this be good?'' I thought, as I suffered and could not care for my four children or husband.
During the worst of my illness, I stumbled across Joel Osteen's book ``Your Best Life Now.'' Since my life was anything but good, I thought I'd read it. His attitude helped me stay upbeat and to see the positive in my situation. He reminded me that things could change. I needed to be reminded again and again that good could come out of pain. That healing could come. That hope was alive and God was there. Chuck Swindoll's ``Joseph'' and Jim Cymbala's ``Fresh Faith'' were also encouraging books.
I learned that the strongest, most capable person (like I was) could be reduced to a non-functioning, pain filled, emotionally labile person. True strength, I found out, was not in what a person could accomplish, but in what a person could endure.
I still battle Lyme disease. Someday, I hope to be well and participate in life fully again. In the meantime, I plan on writing a book that will help others navigate through whatever medical nightmare they are experiencing.
It is likely that a steroid shot to my knee set off latent Lyme in my body. The orthopedic doctor did not recognize what was happening. He also did not recognize the Jarisch-herxheimer reaction to the antibiotic given to me during knee surgery. All clues....all missed....by all the doctors. I am contacting each doctor who missed my diagnosis and encouraging them to include Lyme disease in their differential diagnosis. Every specialist should be aware of Lyme disease, for the Lyme bacteria can affect every organ of the body.
My hat is off to those who suffer with any kind of illness or disability. You deserve gold medals as much as any Olympic athlete. My utmost respect and admiration goes to the doctors who actually listen to their patients and do what they can to help. My love goes to my family and my God. I would not have survived without all those who helped me. I am also grateful for the internet. Without it I wouldn't have discovered the cause of my problems.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Jill E.
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posted
Hi Timaca,
Great story, too.
By the way, Timaca, how did the HBOT go? I've read posts of yours while you were still doing the sessions. Do you feel they were worthwhile?
What was the ultimate treatment that eradicated the C.Diff?
Glad to hear you are doing so much better. I watch Joel Osteen's sermons on TV all the time, have his book, many of his tapes/CDs. Always uplifting.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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timaca
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posted
Hi Jill~ I intend to do a separate post on HBOT in about 2 weeks...
But, since you asked, here is a nutshell...
I did get a significant herx 12 days after starting HBOT. Headache, bachache, extreme fatigue, right knee pain and just feeling ill...hard to stand up. So, I figured it was doing something.
I felt poorly the whole time I did the treatments (10 weeks---40 dives).
After the dives, I noticed my stamina and enthusiasm for life had improved significantly. Life went from being a chore, to being do-able with enthusiasm. Mind you, I wasn't normal, but I was better.
My lyme symptoms, burning nerves, muscle twitches, head pressures and aches had not improved with HBOT.
But, since the stamina had improved significantly, and I did have a herx, this past week I did 2 more dives. I plan on seeing if I get a herx on day 10, 11 or 12 (my ususal time for a herx). If I do, I likely will continue with 2 dives every 2 weeks or so.
Interestingly enough, the night after my second dive, I did have internal vibrations...this time in my arms and legs. I had previously only gotten that in my chest area before. And the last time I had vibrations was a year ago...after my antibiotics were stopped due to the fungal infection in the picc line...many of my lyme symptoms came back, including vibrations.
I am suspicious that the oxygen got into my CNS and aggravated the bacteria, causing the vibrations..but not sure.
I will post more later.
What finally kicked the 11 months of C. diff was Rifaximin. I took 2 weeks of oral vancomycin (250 mg tid) followed by 2 weeks of rifaximin (200 mg tid). I've been C. diff free for over 70 days now. My GI tract is not normal yet (constipation is now an issue!) but, we're working on eating LOTS of fiber. LOTS.
Joel is great. I listen to his sermons online. It really helps me see the positive. Glad you like him too.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Great link!!- I've submitted my story, as well.
Just tweaked/lengthened my college essay.
I suppose the more of our stories are submitted, the more these Newsweek fellows will pay attention!
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
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bettyg
Unregistered
posted
timaca, outstanding writing of your story, and length of paragraphs was great for this neuro-lymie! another wonderful lyme story! well done!
posted by timaca...
All clues....all missed....by all the doctors. I am contacting each doctor who missed my diagnosis and encouraging them to include Lyme disease in their differential diagnosis. Every specialist should be aware of Lyme disease, for the Lyme bacteria can affect every organ of the body....
timaca, i applaud you for doing this; educating ALL WHO MISDIAGNOSED YOU!
way to go, and i hope that i/plus OTHERS WILL DO THE SAME ... educate those who MISDIAGNOSED US!
em, please post your article as well! i'm really enjoying reading others stories on how so many of us had almost duplicate symptoms, etc!
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David95928
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posted
Timaca, good story! here's my second revision.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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timaca
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Member # 6911
posted
David~ I cut and pasted your story to my computer and it counted 967 words. It would be easy for you to cut out the extra 67 words. For example, your first paragraph can lose 20 words by changing it to:
In 1991, while in doctoral study in Massachussetts, my feet and knees went numb. I had to hang onto walls in order to walk. I thought I was developing MS, but this symptom resolved. I did not realize my days of good health were over.
Happy revising!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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timaca
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posted
PS...to do a word count on your computer, click on "tools" then scroll down until you find "word count". It wasn't visible at first, but it came up as I scrolled down. At least that is how my kids told me to do it! Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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David95928
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posted
Kids are great!
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
David -- good going -- don't have a lot of time right now to read what you wrote, but one fact stuck out for me: the importance of the physician's assistant in clueing you in.
This never happened for me, in the 300-plus places I went for help over 25 years. I was diagnosed online last year by a nurse in Virginia.
To me, this point is SO important, because it could help save our lives: the importance of medical people recognizing what might be going on when we come in for medical attention. Then more of us would have a chance to have that "turning point" experience.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Timaca, just read your story. Thx for posting. I too am contacting the medical personnel I saw and educating them. After that, the schools that train them, including chiro, massage, bodywork, etc.
[ 09. February 2007, 04:01 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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timaca
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posted
Good for you Robin123~ I figure the good doctors will listen and learn. The ones who are too busy or too full of themselves (or too afraid of a lawsuit) won't.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I'd like to share my story with "Newsweek" and the world. Many of you know that my story has had some massive twists to and it I have been told I have a life threatning orphan illness. Sure do manage to get all the unknown and rare stuff :-(
Could somebody please give me a link to the info. on this on Newsweek please? Would really appreciate it!
For all of those that ask about me, I know this is a different topic, but I can give a quick update. Recent bad experience with a doctor, and we are searching for a new one. Labs came back negative so I am unable to get the treatment I so desperately need. Dr found out the lab most likely made an error when he talked to other drs that have had this happen to their patients.
Labs will be checked by another lab shortly. There is belived to be an endocrine problem making me sick, and causing everything to go off with my poor body. They are trying to figure out what that is, and my good dr is finding me a dr to go to.
He is actually calling and talking to them before he sends me to them. He has ruled out ALOT of drs. He says I have been through too much, to have me sent to another dr and have a bad experience if he could have prevented it from happening by "screening" them up front.
I continue to swell and it continues to get worse and worse. I struggle to go places but push through and pay for it every time. I spend 3-4 days flat out in bed everytime I do something the least bit "normal."
I am still in pain but at least have meds to take it down to a more manageable level most of the time.
I'll let you all know more about me when I have more news. There isn't anything really great to say at this point, but I continue to fight and shall win. I just hope and pray it's sooner rather than later.
Blackbirdsings
Posts: 114 | From USA | Registered: Sep 2005
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posted
Hi Blackbird -- have you tried to find out who anywhere in the country/world knows what you might be dealing with?
If this condition has anything to do with Lyme, then you could post what you're finding out or looking for in the medical info category.
Also to ask Lymenet folks whether anyone else here is dealing with what you're dealing with or knows someone who is. -- Robin
Posts: 13116 | From San Francisco | Registered: May 2006
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timaca
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posted
The link for the newsweek story is in the first post.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
welcome back to the board blackbirdsings! really have missed you.
thanks for the update you shared here; sure have been wandering about you. of course, you're still in my thoughts/prayers.
robin, bbs, has been many places including taking a week long+ drive to denver! good/bad news there.
she's really been searching for answers all over the place. just to fill you in a little with the news she sent me by pm.
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posted
Betty, Thank you for all of your prayers :-) I got your email on your update.
Thanks for explaining a little to others. We no longer believe this has anything to do with lyme disease.
It is very complex, and I have some top doctors working on my case. They are bringing in other specialists.
More tests have to be done, and more things gone over, etc. Not much of an update, but it is complex and nobody else on this forum has anything like it.
Blackbird
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David95928
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posted
Mine has been submitted with revisions. I will post it from home.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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timaca
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Member # 6911
posted
Looking forward to reading it!!
Timaca
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bettyg
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posted
blackbirdsings, thanks for the update. looking forward to your posting your 900 word limit story here too! best wishes my good friend!
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David95928
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posted
Here we go:
My Turn
During the summer of 1991, while in doctoral study in Massachusetts, my feet and knees went numb. I had to hang onto the walls in order to be able to walk. My fear that I was developing MS was relieved when this symptom resolved spontaneously. I did not realize my days of good health were over.
That fall I developed bursitis in both hips; then atypical thyroid problems emerged. Initially diagnosed as infectious thyroiditis, the diagnosis was changed to Grave's disease. I underwent treatment with radioactive iodine which destroyed the thyroid's ability to function, and started artificial replacement for life.
Over the next ten years a number of other health problems emerged. By 2002 I was diagnosed with asthma, chronic bronchitis (possible COPD), vertigo, peripheral neuropathy, hormonal abnormalities, aphthous ulcers, angular stomatitis, and arthritis in the spine. Undiagnosed but present were problems with memory, concentration, and orientation, severe fatigue, low grade fevers with chills, and crippling tendon pain.
On January 1, 2003, I awoke with conjunctivitis (pink eye) and went to the only open walk-in clinic. There I was seen by a physician's assistant. Neither of us was in a hurry and we discussed my extensive and puzzling medical history. He suddenly asked, ``Have you ever been tested for Lyme disease?''
Internet research led me to lymenet.org. I became convinced that Lyme disease was why, despite good diet, normal weight, regular exercise (until recently), and previous excellent health, I was rapidly declining. Through the ``Lyme underground,'' I found a physician who believes that chronic Lyme disease exists and that people who have it benefit from long-term treatment with antibiotics.
Numerous tests, lots of antibiotics, and four years later, I have mostly recovered, built my own house, and progressed in my field. I have returned to weightlifting, and am in better cardiovascular shape than ever before. Other than the consequence of having had thyroid oblation, my only diagnosis is Lyme disease. I still have occasional mild symptoms but have been given another chance at life.
Many in my situation have had far greater difficulties both in securing treatment and good outcome. Two years ago a local young man of twenty-one died of it unexpectedly. There are many who drive hundreds of miles and pay out of pocket in order to be treated because of insurance company refusals to cover necessary care. Many do not enjoy my level of recovery. Some have become disabled and financially devastated.
I have been very fortunate to have education, assertiveness skills, a loyal partner, a truly collaborative physician, health insurance, and a can-do attitude. With these I have been able to address my illness despite a raging and nasty medical controversy over whether what I have exists or is treatable. The debate is between university based researchers, who have strong ties to the health insurance industry and the medical journals and their editorial boards, and physicians practicing in the community. This ``Lyme war'' has a detrimental effect on all people whose Lyme disease was not caught early and treated aggressively.
The medical researchers, who don't need to cure anyone of anything to earn a living and progress professionally, hold that Lyme disease is cured with thirty days of antibiotics. If, after such treatment, the individual still has symptoms s/he has ``post-Lyme syndrome.'' They proffer this purported and untreatable condition as the explanation for continued symptoms but offer no scientific explanation or evidence of its presence. It is used to deny treatment to people with a life altering and sometimes fatal illness. It's a purported condition because, if the medical researchers truly believed they had identified a new syndrome to exploit for prestige and personal gain, they would be all over it with ``discoveries,'' publications, and licensing agreements.
Lined up against all of this institutional power is a small number of frequently persecuted physicians, who consider chronic Lyme disease to be due to continuing infection and treat it with long-term antibiotics. Also fighting the system are the suffering people who endure illness, non-payment for medicines, frequent disability, and scorn of much of the medical profession.
The attorney general of Connecticut is now investigating how the Infectious Disease Society of America (IDSA) developed its new and even more restrictive treatment guidelines. At issue is whether, by selectively considering evidence and excluding dissenting opinions, the Society is engaging in restraint of free trade. The IDSA claims that the guidelines are simply recommendations. That is disingenuous because the insurance industry uses the guidelines to restrict access to treatment and the medical boards use them to persecute our doctors. The IDSA has reason to be worried. The clinical evidence and the research from overseas, which they are unable to suppress through their editorial board memberships, are catching up with them.
This is my story of dealing with a new and controversial illness. I have been fortunate to get treatment and a good response. Yet I have had to deal with having coverage for my medications denied, physicians insulting my intelligence, and the knowledge that virtually no effort is being made to research effective treatment. Rather, the research is focused on attempting to demonstrate that we are untreatable. However, the inconvenient fact is that high profile individuals, such as writer Amy Tan and musician Daryl Hall, have gone public about recovering from chronic Lyme disease through the use of long-term antibiotics. This gives me hope that truth and ethics will prevail.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Good job David!! Be sure to post back when you hear from them!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
david, a suggestion: how about deleting all your other DRAFTS and then just leave your FINAL VERSION YOU SENT? it's really confusing since you changed each version and it doesn't show up in there what was added or deleted.
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But probably you were just brilliant before you became ill. Anyway, thanks very much for sharing your story and for spreading the word!
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