RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
Why are so many of you asking questions that your LLMD should be answering? If they're soooooo Lyme Literate, wouldn't you listen and believe what they're saying?
Please excuse me, but I don't understand. If anyone knows about this disease more than people that have dealt them the same blow as you, wouldn't it seem obvious, that your doc is the one to listen too?
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Because they are sooooo busy, perhaps?
Also, we ask questions on here because we know that these people have gone THROUGH it, have FELT it. Not all LLMD's have Lyme and know how it feels. Like a male OBGYN... he doesn't KNOW how it feels to give birth, so an expectant mother will ask questions of other moms.
And not all LLMD's follow the same protocol.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Most doctors are average, as in most other people in any chosen field.
Average does not cut it with Lyme Disease.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
Docs have many other priorities beyond your health. You as a patient is about as important to them as your billed time (same true for any other profession).
Sure they have more experience that average person who knows nothing about lyme (and actually most about everything), but they will never spend as much time on your case as you can, and if you are not stupid you can learn a lot about medicine and disease yourself
Posts: 856 | From MA | Registered: Jul 2009
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posted
my doc is not a question friendly doc and there is only so much time
also, different docs would answer the same quesiton differently. i like to get an idea of others thoughts on subjects
Posts: 207 | From NH | Registered: Jul 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
All great answers!!!
....and unfortunately, there is an element of guessing when it comes to symptoms vs TBI because they are so interrelated.
Sometimes it's more obvious then other times. But in our case, we had/have what we (the LLMD and ourselves) all believe are muliple bacterial infections and it's nice to exchange notes, esp'y with others that lived where infection was contracted, thereby discerning which infection could be the primary symptomatic player.
Also, maybe someone on the net comes along with something outside of TBI's to shed new light on a completely different health issue we too may have outside of the LLMD's expertise.
My gosh, even as a Neurologist, my Dad would always get patients from other Neurologists because their doctor could not figure out what was wrong...and he was in the same field.
Never such a thing as too much information, except when we lymies get into the gross mode , where we apologize to eachother for being, but desperately need advise. I've been there .
No one person can no everything so we work together.
ps- quite a few friends on the lymenet have helped me to realise discreet symptoms in our family that I didn't pick up on my own. A doctor is only as helpful as you can explain your symptoms.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
You got some great answers. I'll add that many of us do not trust doctors anymore.
That said, I trust my LLMD more than any doctor I've seen and I've seen a lot of doctors.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by RDaywillcome: Why are so many of you asking questions that your LLMD should be answering?
You have a good point there. But to me, this board serves for issues that are too big to ignore and too small to call my llmd every single time.
I have also enjoyed making some personal friends here who I can discuss issues that are beyond what my regular/not-illed friends can contribute and understand.
Sometimes I want that personal experience rather than a textbook answer.
But I do not substitute this board to my llmd or other medical professionals I am working with.
Posts: 822 | From midwest | Registered: Apr 2009
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
Well, I'm a veteran for over eight years, and I don't understand why you would go to a website and ask such questions.
Is this the norm for other message boards with people with other illnesses?
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
So I take it that you trust the lay person over a doctor who specializes in lyme and co-infections?
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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quote:Originally posted by RDaywillcome: So I take it that you trust the lay person over a doctor who specializes in lyme and co-infections?
Did you read the posts above? You were given many reasons why people use internet resources . It is not "trusting lay person over a Doctor" , it is trusting the wast array of human knowledge available in the internet over opinion of a single Dr who has not enough time to answer even most important questions , and for whom you and your problems are only subject of interest for a course of short appointment
Granted you need to be able to do basic research and be able to filter out the chaff to get something useful out of the internet - just like with everything else.
Posts: 856 | From MA | Registered: Jul 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
RD said.. "Why are so many of you asking questions that your LLMD should be answering?"
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
You asked, "Is this the norm for other message boards with people with other illnesses? "
Other illnesses (or should I say infections?)have definate answers that a regular practioner can give to their patients.
If you have strep throat you go on abx.
I'm not saying each infection is not bad. But with Lyme and co-'s there is just no easy definate answers. With other INFECTIONS drs know how to treat them, and also know how to test for them for that matter.
We are trying to figure our symptoms and infections out, as are our LLMDS. Nobody knows for sure how to get rid of Lyme and what infection causes what symtpoms.
We are dealing with many strains of bacterias, and protozoans, and whatever else, and it affects each on us diffently.
And please, forgive us, the need for support by someone else that is going through the same thing! According to the response I got on here, I am guessing that yes, other people with other disease do go on other forums to talk about their other diseases.
[ 09-13-2009, 12:37 PM: Message edited by: LisaS ]
posted
When I had an llmd, I could not call every single time I had a question. In fact, with my particular one, they made me feel "guilty" or like I was "bugging them". Or, they wouldn't call for days and then I had already gotten my answer from somewhere else or it resolved.
LLMDs are not Gods. I can't call my own regular doctor and just ask him questions. They want you to come in. It feels foolish to go in (and expensive for some) to go in and ask a question that may or may not be serious.
Since everyone here has gone through the same thing, a lot of us like to ask each other what happened to them when ____ happened or when they took this medicine did _____ happen because they are the ones who have been through it before some of the others here.
Anytime you have a scary, confusing, chronic illness, it feels good to be able to talk about it, ask questions about it, because there are sooooo many weird symptoms.
Now in my case, I don't have an llmd anymore, I can't afford it. Some people can't. So, I ask questions here. It's very valuable to me. I have no one else in this world except for my son. I have no one "bigger" than me to make me feel like everything is okay...or tell me when they think it's not. When you have Lyme, you have so many symptoms, sometimes the line gets blurred of what is what, what is more serious vs. just scary, etc. it's nice to have SOMEONE to talk to about these things, as I am alone, trying to figure this out on my own.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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Shosty
Unregistered
posted
Lisa S., Your answer is absurd. Many, many other illnesses and disorders do not have clear-cut answers, have controversies in treatment, and have doctors who are too busy to even listen.
While my family deals with Lyme, we also deal with many other illnesses and medical problems, and often find that Lyme folks somehow feel uniquely victimized, when others with other illnesses are going through similar things.
My daughter has type 1 diabetes. It is not so simple to take insulin. One doctor will recommend "tight control" and another will say is is too dangerous/ Some doctors limit carbs, others do not. Some allow pumps right away, others don't. Diabetes care is fraught with such questions.
She also has endometriosis. There is a big controversy about excision versus other types of laparoscopic surgery w/cautery, versus horrible hormonal approaches such as Lupron. It is hugely difficult to decide how to proceed, and finding an excisionist is harder than finding an LLMD.
Finally, she has migraines and seizures. The range of opinions on how to proceed with these neurological issues is incredibly difficult to handle. Migraine patients get treated as if they have psych. problems, MD's throw all kinds of drugs at patients, and few of them work w/out side effects. There are no clear cut answers here either.
My husband had a stroke and can only be up for 5 hours at a time. There is no clear cut answer for that either. MD's think it is depression despite numerous studies that show that post-sroke fatigue has nothing to do with depression and is related to brain damage and possible effects on cortisol.
Sorry, but the idea that any health issue these days has a "clear cut answer" is ridiculous. The system does not allow enough time for anything but cookbook answers, and what may appear to be a quick easy answer is very often obtained in 10 minutes, and is often not only wrong but dangerous.
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posted
Shotsy, you could have expressed your experiences dealing with other illnesses without attacking LisaS. Uncalled for, IMO.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
Speaking from my own experience, I do not believe there are many, or any for that matter, serious diseases with any clear answer.
My wife had gone through countless number of diagnosis in four years before arriving to Lyme. None of these diseases had any clear answer in terms of the cause or the treatment.
So I think it is incorrect to state that all other diseases have a clear-cut answer. It is that belief that often makes us Lymies an unique victim of the society and science.
Posts: 822 | From midwest | Registered: Apr 2009
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Shosty
Unregistered
posted
WTL- Not sure what you mean by "It is that belief (that other diseases have a clear cut answer) that often makes us Lymies an unique victim of the society and science."
I was trying to say that other diseases do not have clear-cut answers, and so Lyme patients are NOT uniquely victimized.
As for the tone of my reply, try taking care of a kid with insulin-dependent diabetes for 15 years, beginning in toddlerhood, and dealing with all the prejudices that come with that, and you will understand why the example of type 1 diabetes as having easy answers would make me answer like that.
My child with diabetes could die overnight if her blood sugars were running close to normal and then dipped too far (the problem with tight control) and she could also die overnight if her blood sugars were too high. Try walking that plank for year after year. Deciding on the best course of action is very, very difficult.
Lisa S. should learn more about other illnesses before writing about them so cavalierly. It would be painful for anyone on Lymenet to read something like "with Lyme, thre is a clear cut answer, and all you have to do is go to the doctor and get antibiotics." So it was painful for me to read the same about insulin. Maybe someone here can learn from this.
To get back to the original question, there are scores of websites and forums for every disease or disorder, and it is commonplace for patients to communicate. Most of the answers we have found for our kids have come from other parents. We consider ourselves lucky to have a PCP who listens to our ideas, because that has been the key.
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I mean to say that it is that belief ( that Lyme disease is the only one with no clear answer) that makes us a unique victim. Another way to put it is that I do not personally "approve" the notion that LD is unique in terms of not having any clear answer. Many other dissease also don't have clear answers.
One and same of what you said.
Posts: 822 | From midwest | Registered: Apr 2009
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Shosty
Unregistered
posted
Thanks for explaining and for understanding what I said.
I have been part of a group of parents with children with a huge variety of special needs and chronic illnesses. We find common ground, rather than say that our own challenges are special.
Internet forums tend to be more specialized, and so parents or patients with that specific illness sometimes lose perspective on what others are also going through.
I can certainly apologize for posting in a way that seems angry, but I maintain the original point that none of us has a corner on suffering, and should be careful in what we say about other problems.
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posted
Nowadays, one has to be one's own advocate when it comes to one's health.
I always research, read, and learn as much as possible about any health issues affecting myself or my loved ones. It would seem odd not to. I don't think anyone should ever blindly put their faith into ANYone or anything, doctor or otherwise. So, lymenet is a part of my research into this disease I'm dealing with. I want to be aware.
Don't get me wrong, I've had to put my faith in my llmd to a certain extent because lyme treatment goes way beyond anything that I could figure out and/or do for myself. I do follow his guidelines because he's the expert, but I also want to read and learn about how others are handling the disease and their symptoms so I can intelligently discuss my illness and treatment with my doctor, as well as discuss any changes he or I would like to make regarding my treatment.
Posts: 423 | From Upstate NY | Registered: May 2009
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posted
Without sites like these I would be on happy pills and pain killers with 'fibro'. With sites like these they led me to a suspicion, then a diagnosis, then a llmd in Seattle. If I have questions or want to chat is $110 per phone call to the llmd. Chatting on these sites provides valuable info so I can go to each appointment armed with questions and not just sit there waiting for the llmld to guess whats going on. I think its called taking charge of my health by whatever means possible.
Posts: 234 | From BC Canada | Registered: Aug 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Wonko thank you for sticking up for me.
I did NOT mean to ever offend anyone and will edit my post. i apologize Wonko. I was reacting to the question Rdaywillcome asking why we Lymies go on here to talk to eachother.
You're right all diseases are not clear cut. I do or I should say DID work in health care as a matter of fact. I did take several classes on Diabetes, but I am no expert.
I was just saying I think with some other diseases you can call a dr and ask a question and there will be an answer and the dr will believe that patient.
With Lyme, you call your regular practioner and say I have inerenal vibrations, and they just roll their eyes at you and say you have anxiety...
I did not say "all' diseases were simple and easy to treat. So sorry to all I have offended. My heart is racing right now, cuz I never meant to ever cause such problems. Just wanted to defend myself for asking other Lymies questions.
I also never said that us Lymies have a "special corner" on suffering. Every person has pain, and noone can feel another's pain.
But we do reach out to people going through the same thing. I too worked my whole life with others who are mentally and physically disabled. People with a particluar disease reach out to others with a particular disease, ya know what I mean. That's why us lymies ask eachother questions.
I truly hope your daughter is okay and nothing bad happens to her. I did work with people with Diabetes and know how fast things can change, from minute to minute.
So that's all I'm saying is lymenet and my friends on here is where I go when I feel like I need a friend. And I'm sorry I even have to defend that decision to anyone.
[ 09-13-2009, 01:19 PM: Message edited by: LisaS ]
posted
Sorry your heart is racing. I guess your post made mine race. Peace.
There are few illnesses, in my experience, that are free from the experience of doctors rolling their eyes. Honest. Especially if a female parent or patient has done research. That really irks a lot of doctors.
I don't think my daughter will ever be okay, medically, but she has learned to deal positively with her problems. She is way ahead of me. But then, I can be a lot more "chill" about my own problems, than I can for my child's.
Hope you find a good, at least somewhat "clear" answer for your Lyme treatment and that you get better. Good luck.
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Yes it is always easier to deal with your own illness then a child's. When my son had open heart surgery, that is when my lyme came out. I think that's why I believed the drs at first that it was panic attacks, even though inside I knew something more was wrong.
posted
I knew what you were trying to say, LisaS. And I've often had the same thoughts about lyme vs. other illnesses/diseases. It is in a league all it's own for sure.
Shosty, I also think you were harsh. I sincerely feel for you, your husband and your daughter, but honestly, I'm having a diffucult time figuring out how you could be offended by Lisa's comment. I think you're reading way too deeply into things and personalizing.
I also have many loved ones with health issues, as I know others on here do, and did not take offense at Lisa's comment.
Posts: 423 | From Upstate NY | Registered: May 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
RDaywillcome, can I ask you why you even made this post? I saw your other posts and you are asking questions and giving advice.
Just curious. I tried to private message you but noticed you disabled getting private messages.
[ 09-13-2009, 04:20 PM: Message edited by: LisaS ]
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