No, not to obtain medical information from others. However to self treat can always be risky. Yet many of us have no choice, given we cannot either afford or find effective medical help anyway!
In the age of the internet and communications, obtaining information is vital. Not all physicians are up-to-date on current treatments..in fact, most are not. Receiving information from other lyme patients can lead you to current studies and treatments that are available. Unfortunately, today it seems, that the patients must do the research. Most doctors do not have the time and when confronted with new information some are willing to at least take an overview of the proposed information. It is a vital factor towards recovery to obtain information from all sources including those who are in the midst of the battle.
I think it can be tricky. I've found that some fellow Lyme patients aren't always talking from what their doctor has told them about the disease. So if they are spreading "ways to get better" I'm always discerning. When sharing symptoms I think it can be helpful and encouraging and yet also scary and discouraging at the same time. I find that the more I get to know a fellow Lyme patient, the more I trust their judgement and advice they give.
I only think it is dangerous if you jump right it and follow the advice. Obtaining the information and doing research and asking questions I have found so helpful. I agree not all doctors are up to speed on the latest and greatest and so sometimes you can bring information to your doctor that may end up being helpful.
I think it can be useful to share experience and even expertise gained, but it can also be dangerous. One must always remember that we are each responsible for our own care and decisions. Another Lyme patient, however knowlegeable and well-intentioned they may be, is STILL a lyme patient and not a trained physician and cannot be responsible for handing out medical advice, or held responsible when they're wrong. They can certainly be of great value, bringing your attention to other possibilities that your doctor may not be aware of, but we have to use caution and good sense in how soon and how far we take advice from others, researching it ourselves and talking with a trusted LLMD before proceeding.
Another issue that can cause sharing medical information to be dicey: Lyme patients are often affected cognitively and mentally/emotionally by their illness (as I am) and so may not always give sound advice or may become difficult to interact with or even combative. I've been on both sides of this experience, I regret to say. We just aren't our usual selves. Sometimes the wrong nerves seem to connect in a weird synapse and I add 2+2 and get "chipmunks" or something equally random or ridiculous. It can play havoc with decision making and important interpersonal relationships. It's important to guard both.
Lastly, one more sad reason to be cautious: the fact is that there are vicious people out there masquerading as Lyme patients, looking to take advantage of whoever they can. So I would use extreme caution before sharing any real, substantive personal medical information with anyone online. I also don't share the name of my LLMD online (for his protection), as those who have gone after wonderful LLMDs like Dr. Jimsek are often "trolling" online to see who they can pounce on next. Sounds like paranoia, I know, but it happens.
I do not feel it is dangerous to a point, I do not have a support group in my particular area, no doctor to treat me unless rich, which I am not. I have learned a lot from swapping stories and learned that I am not alone. A lot of my symptoms other people have too. I research everything other people use for treatment. So if I ever do find a doctor, I will be more knowledgeable.
Doctors are human too and can overlook things. I think discussing different methods of treatment are good but must be run passed your doctor first before you implement them. You might find something that your doctor didn't even think of trying or forgot about, or even give him something new to research. You might be not only helping yourself by asking your doctor about these treatments, but you could also be helping other Lyme patience your doctor sees as well.
Yes and no. Yes because acting or playing Dr seems reckless and without knowing a person's body terrain/symptom history/infection load I wouldn't advise, especially antibiotics.
I feel like Dr's are still trying to figure out this disease and in a sense we act as our own drs, nutritionists, etc. These drs don't realize the whole picture, it's not just lyme. I have found it IMMENSELY helpful to hear from those who have found something whether chelating, herbs, immune support, nutrition, etc that has actually worked.
No its not dangerous. The more help and advice that you can receive the better. All Dr's give you is their "best guess". That is why its called "practicing medicine". Also, no one understands what we as sufferers go through on a daily basis. Our fellow lymies can give us tips on relief and or medicine that they have tried and had success at.
Like some others have said, I believe you always have to be discerning in taking advice from anywhere. What helps one person may be deterimental for another. I've had a lot of damage done to me from following the advice of ignorant MDs. Doctors can be dangerous too.
I do not think that it is dangerous for people to gather information using any means necessary to increase the transparency of their issues with Lyme. I do think it is a bad idea for information gleaned from friends and the web as "advice." Gathering information from many perspectives is a great research approach. If medical science does that, why can patients not? Motivation to gather information is high seeing that awareness, identification and treatment of Lyme is often denied. Patients must advocate for themselves in order to pursue their rights. Many MDs have different orientations from one another. Patients can save their time and money by comparing notes on success rates before visiting doctor's offices.
No, not to obtain medical information from others. However to self treat can always be risky. Yet many of us have no choice, given we cannot either afford or find effective medical help anyway!
ReplyDeleteI like to hear how others treat but I do my research and talk to my LLMD first before starting anything. :)
ReplyDeleteI think that obtaining medical information from other patients has been a real blessing for many. So not dangerous to obtain info.
ReplyDeleteTo not double check the info might be a bit dangerous.
In the age of the internet and communications, obtaining information is vital. Not all physicians are up-to-date on current treatments..in fact, most are not. Receiving information from other lyme patients can lead you to current studies and treatments that are available. Unfortunately, today it seems, that the patients must do the research. Most doctors do not have the time and when confronted with new information some are willing to at least take an overview of the proposed information.
ReplyDeleteIt is a vital factor towards recovery to obtain information from all sources including those who are in the midst of the battle.
I think it can be tricky. I've found that some fellow Lyme patients aren't always talking from what their doctor has told them about the disease. So if they are spreading "ways to get better" I'm always discerning. When sharing symptoms I think it can be helpful and encouraging and yet also scary and discouraging at the same time. I find that the more I get to know a fellow Lyme patient, the more I trust their judgement and advice they give.
ReplyDeleteI only think it is dangerous if you jump right it and follow the advice. Obtaining the information and doing research and asking questions I have found so helpful. I agree not all doctors are up to speed on the latest and greatest and so sometimes you can bring information to your doctor that may end up being helpful.
ReplyDeleteI think it can be useful to share experience and even expertise gained, but it can also be dangerous. One must always remember that we are each responsible for our own care and decisions. Another Lyme patient, however knowlegeable and well-intentioned they may be, is STILL a lyme patient and not a trained physician and cannot be responsible for handing out medical advice, or held responsible when they're wrong. They can certainly be of great value, bringing your attention to other possibilities that your doctor may not be aware of, but we have to use caution and good sense in how soon and how far we take advice from others, researching it ourselves and talking with a trusted LLMD before proceeding.
ReplyDeleteAnother issue that can cause sharing medical information to be dicey: Lyme patients are often affected cognitively and mentally/emotionally by their illness (as I am) and so may not always give sound advice or may become difficult to interact with or even combative. I've been on both sides of this experience, I regret to say. We just aren't our usual selves. Sometimes the wrong nerves seem to connect in a weird synapse and I add 2+2 and get "chipmunks" or something equally random or ridiculous. It can play havoc with decision making and important interpersonal relationships. It's important to guard both.
Lastly, one more sad reason to be cautious: the fact is that there are vicious people out there masquerading as Lyme patients, looking to take advantage of whoever they can. So I would use extreme caution before sharing any real, substantive personal medical information with anyone online. I also don't share the name of my LLMD online (for his protection), as those who have gone after wonderful LLMDs like Dr. Jimsek are often "trolling" online to see who they can pounce on next. Sounds like paranoia, I know, but it happens.
I do not feel it is dangerous to a point, I do not have a support group in my particular area, no doctor to treat me unless rich, which I am not. I have learned a lot from swapping stories and learned that I am not alone. A lot of my symptoms other people have too. I research everything other people use for treatment. So if I ever do find a doctor, I will be more knowledgeable.
ReplyDeleteDoctors are human too and can overlook things. I think discussing different methods of treatment are good but must be run passed your doctor first before you implement them. You might find something that your doctor didn't even think of trying or forgot about, or even give him something new to research. You might be not only helping yourself by asking your doctor about these treatments, but you could also be helping other Lyme patience your doctor sees as well.
ReplyDeleteYes and no. Yes because acting or playing Dr seems reckless and without knowing a person's body terrain/symptom history/infection load I wouldn't advise, especially antibiotics.
ReplyDeleteI feel like Dr's are still trying to figure out this disease and in a sense we act as our own drs, nutritionists, etc. These drs don't realize the whole picture, it's not just lyme. I have found it IMMENSELY helpful to hear from those who have found something whether chelating, herbs, immune support, nutrition, etc that has actually worked.
No its not dangerous. The more help and advice that you can receive the better. All Dr's give you is their "best guess". That is why its called "practicing medicine".
ReplyDeleteAlso, no one understands what we as sufferers go through on a daily basis. Our fellow lymies can give us tips on relief and or medicine that they have tried and had success at.
Like some others have said, I believe you always have to be discerning in taking advice from anywhere. What helps one person may be deterimental for another. I've had a lot of damage done to me from following the advice of ignorant MDs. Doctors can be dangerous too.
ReplyDeleteI do not think that it is dangerous for people to gather information using any means necessary to increase the transparency of their issues with Lyme. I do think it is a bad idea for information gleaned from friends and the web as "advice." Gathering information from many perspectives is a great research approach. If medical science does that, why can patients not? Motivation to gather information is high seeing that awareness, identification and treatment of Lyme is often denied. Patients must advocate for themselves in order to pursue their rights. Many MDs have different orientations from one another. Patients can save their time and money by comparing notes on success rates before visiting doctor's offices.
ReplyDelete