posted
First off, I do realize everyone is different and react differently to abx and herb and detox protocols. Consider that covered.
But I just keep seeing so many looking for answers/validation from all you troopers and read of all the different treatments everyone is trying to get better.
Seems most of us are doing the docs/ducks homework too.
Then I see so many people reacting pretty badly on treatments for months on end, with endless suffering and side effects, then they are switched to something else that makes them feel worse, etc.
I think like us, docs/ducks/LLMD's are shooting in the dark.
Don't mean to be a naysayer.....just an observation and concern. I wish someone had a solution that would help all of us.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
hey,
i was just thinking this tonite. and for the most part I think most medecine is a guessing game. sure certain abx are good for certain bacteria etc. , but for the most part it is a guessing game.
Im puzzled by my reactions to certain abx. how, an abx not usually used for lyme made me herx and feel a bit better.
I know to me it just seems like trial and error for the most part.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i got better by working with my docs (2 llmds). i educated myself and talked over tx with them . some they refused...some i refused...by working together we came up with what we could both live with...and it worked. they appreciated my involvement and respected my knowledge-even tho my expressive language was pretty bad because of brain fog.
i left my first two llmds because they told me what to do and wouldn't let it be a two way street.
it is too complicated...there is too much to know. no doc can know everything about you...you need to read and educate yourself and figure out-maybe such and such a drug won't be good for you cuz its side effects are your weakness or something.
any llmd that says he can cure you for sure is not a real llmd in my opinion. all the good ones i know-including # 1 are not afraid to say they don't know.
so yes-we are all guinea pigs and probably always will be if the bugs keep learning new ways to get over on us...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I agree that it takes a partnership approach to really get well -- hubby has had a couple of different LLMD's.
One used the approach, "This is the standard dose of the med you need for Babs or Bart or Lyme." Another one says, "Start slow and only take what you can tolerate."
There are advantages and disadvantages to both approaches.
In my opinion, the severe herxes are not worth the risk of doing permanent harm to the body. However, leaving all the decisions up to the patient only works if the patient is fully informed of all the options available.
When the docs say your symptoms can be caused by either Babs or Bart or Lyme (hubby's tremors/myoclonus/seizure-like episodes) the patient is the one who has to make the ultimate decision of how treatment should go.
Obviously this is stressful -- I question my decisions all the time, because in our situation hubby relies on me to do all the research and advise him.
Yes, we are guinea pigs, but what choice do we have?
One doc (not an LLMD) commented on hubby's positive Borna virus test results this way, "We don't know much about this disease. Don't worry about the test. There may be some research done on it in the next 15 years!!!!!"
I am not willing to do nothing and wait and see what happens in the next 15 years regarding tick-borne illnesses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Of course they are experimenting. Have you seen any evidence of a "cure" for late stage Lyme Disease? There isn't one.
My MD was upfront the first day that I met him. He said we don't have the magic bullet yet so, he couldn't promise anything for sure. But, the MDs that care really are working on finding a solution. We may not agree with many of these folks but, I do believe they are trying to help us.
Yes, you must do your own homework. I can't stress that enough. You are in charge of your health, not your MD. You need to research and you need to partner. We are the ones who will ultimately lead to the medical community finding the best way to treat Lyme Disease. I would prefer that there was a generation before us who had done all this work but, that isn't the case. Consider yourself a pioneer and an asset in this fight. Your trials and errors will eventually benefit the next generation of Lyme sufferers. I have come to find some peace in that. Yet, I continue to fight.
Posts: 1452 | Registered: Feb 2004
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posted
I feel that you must do your homework and get the best doc you can get even if you cant afford it...don't hound the doc and make his life miserable when herxing as it does not help...I have found that there are llmds out there who do know what they are doing and are going against the grain when they prescribe meds....its not the docs fault but the scientist and insurence companies above them....it would be very easy to take an electron microscope and validate lyme or any other infection but that is not going to happen...we must be kept sick so that we will pay the insurence fees..so I go to the side of the llmd..they are true heroes that we cannot do without...if it was not for them alot of us would not be here....I dont use the term experimenting because that is not true...they are gaining knowledge for all of us and unfortunately we are the genie pigs... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
Are they experimenting or are they PREYING on us? They know that we are desperate and willing to try anything. The fees they charge for visits are extremely high; and most of the time we get a prescription for oral meds (so what is the true cost of the visit?). They sell herbs and vitamins (that only can be obtained form them) at highly inflated rates. If something does not work, they try something else (Is it really needed or is to make certain that we stay with them and they can continue to collect their fees). When lab testing is done if it comes back positive it is proof of Lyme disease, but if it comes back negative you are told that the testing stinks and a clinical diagnosis is made. And what of these labs that perform unapproved tests? Why won't they go the extra yard needed to get their magical test approved? Or do they figure they can get our money and let us worry about the rest?
I realize that Lyme physicians that participate with insurance plans are few and far between. I also realize that because they accept insurance the insurance company scrutiny is probably overbearing. It also probably limits their ability to diagnose Lyme disease. But if a physician is willing to treat Lyme disease and deal (probably spend a lot time fighting) with the insurance company and go through the added scrutiny that they are probably exposed to; I at least feel better that the physician is willing to treat me like a patient and not an annuity.
Until there is a test that definitively diagnosis Lyme disease the patients will continue to suffer. Not only in a physical/emotional sense, but in the ability for the less that scrupulous medical professional to prey upon us and "practice." Therefore their hands may be tied and they may be unable to flat off diagnose every patient that walks in the door with Lyme disease (but then again is it always the correct diagnosis); but a physician that is willing to deal with the hassle of the insurance company is a physician that is willing to care for and not prey upon on his patient.
Blue
Posts: 35 | From Blueland | Registered: Apr 2006
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posted
I like to think that we are "trail blazers" rather than guinea pigs! I think that docs that are willing to try treatments that are essentially new and unproven, given the almost complete lack of established medical research, are courageous. It would be much easier for them to follow standard treatment...and if the patient gets better: great. If they don't, he/she tried. As we have seen, it can be personally risky for docs to go "off the reservation" and try things that are not standard medical practice.
Let's not forget that physicians are practitioners, not researchers. They are not necessarily trained to conduct research (unless they go into research medicine). We cannot expect every practicing physician to also be a bench scientist. And conducting research in this field is not as easy as buying a microscope and sitting in a lab. It takes lots and lots of painstaking work, collaboration, writing and rewriting, arguing, submitting and resubmitting...and then it is only one piece of evidence. It takes an established body of evidence to change the tide of medicine.
Just my 2 cents. Try to be a little patient with these docs as they figure things out in partnership with us!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I feel some drs are preying on us while some truly care. My llmd states there are over 100 strains of lyme and it is like shooting darts.
How can any dr treat a disease that has over 100 strains that has no accurate form of testing and hit the bull's eye right off the bat. I don't think any of us could do this even in life.
Think of it as having a yard full of weeds and every weed killer attacks different weeds, but you do not know what the weeds are. How are you going to know which weed killer works? Only by experiment.
Of course after someone figures out exactly which weeds are killed by what product can everyone start to use that herbicide.
This is pretty much how our disease is and if your llmd is not up front with you about this then shame on him or her. Why do you think the insurance companies do NOT want to pay for these drs to shoot darts?
The most important thing is we NEED to educate ourselves as sometimes our drs are extremely busy treating hundreds of lyme pts at a time and only we can be our best advocate! Peace!~
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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posted
I feel some drs are preying on us while some truly care. My llmd states there are over 100 strains of lyme and it is like shooting darts.
How can any dr treat a disease that has over 100 strains that has no accurate form of testing and hit the bull's eye right off the bat. I don't think any of us could do this even in life.
Think of it as having a yard full of weeds and every weed killer attacks different weeds, but you do not know what the weeds are. How are you going to know which weed killer works? Only by experiment.
Of course after someone figures out exactly which weeds are killed by what product can everyone start to use that herbicide.
This is pretty much how our disease is and if your llmd is not up front with you about this then shame on him or her. Why do you think the insurance companies do NOT want to pay for these drs to shoot darts?
The most important thing is we NEED to educate ourselves as sometimes our drs are extremely busy treating hundreds of lyme pts at a time and only we can be our best advocate! Peace!~
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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posted
Doctors are experimenting with us, because there is a paucity of research to give them clear protocols.
I believe that this disease is multisystemic and needs treatment from many angles -- diet, heavy metal detox, getting the die offf out of our systems -- plus the incredible autoimmune responses some of our bodies are having.
Doctors are trained to look for the magic bullet. That is so linear and simplistic, in my view.
I have never heard that there are 100 strains of spirochetes. That doesn't sound right to me.
My LLFMD says let's try this. If it doesn't seem to work, we shift. He always listens to me. He is very open to the research I bring in and cooperates many times with what I say I want.
So it's trial and error, e.g., a type of experimentation.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I think our llmds are brave to try to help us in such an anti lyme climate and more so for those of us who have chronic lyme when many drs don't even think it exists.
I think because of the number of strains of lyme and coinfections and everyone is infected with a different combination.
Then you have variables such as how long have we had it? what areas did it attack? what are the symptoms? ect...
this leaves trial and error as the best option at this time.
I am sure glad my llmd is willing to put up with all the aggrevation of trying to figure out how to treat me... because I would paralyzed in a wheelchair or dead without him.
posted
This question was posed by a person who apparently only has medical experience with Lyme.
I suspect that if he/she were suffering from any number of diseases, it would become plain that there are these kind of problems in a LOT of other areas. For instance, cancer, parkinsons, ALS, CFS, fibromyalgia, etc, etc. It is a long list.
People seem to think that because medicine has some high tech features and can do gee whiz things like transplant organs, that medicine is a sure thing.
Dream on.
Ask the parkinson's patients who have had brain surgeries and are not cured.
Ask the people who don't survive expensive and painful cancer treatments.
Ask the people who have been sticking themselves with needles for years because of diabetes.
We all hope that the medical problem we suffer is the one they have figured out. A lot of us will be disappointed.
If we find doctors who have an open mind and will try to help us, even if the research is not being done by the people who should have been doing it. If you are looking for culprits, look at the federal health agencies who have failed in their job, and allowed insurance companies to stiff us.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
It's called a "political" disease for a very good reason. The docs are as much under the same control as the rest of us.(some of us are "just more able" to profit on this than others I think.)
Posts: 740 | From BC Canada | Registered: Mar 2003
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posted
I sense (and feel) so much frustration here. A lot of us have been under treatment for a long time. I've been with my LLMD for 2 years. I reached a plataeu about 6 months after starting abx and don't seem to be getting any better since then despite "trial and error" with many different treatments.
Docjen, I agree with you that we (ourselves and our docs) are trailblazers. We have to keep looking at this is a positive light. Some docs try to milk us butI think most LLMDs care and are as frustrated as some of us are. And many ARE taking great risks with their medical careers.
Also, you're right, reseach and practice are two different animals. Though some M.D.s work within a research hosital/Univeristy setting and DO research, most researchers are Ph.D.s, not M.D.s.
Your description of how research works is good - but doesn't even come close to the difficulties involved. Coming to an understanding of just one small part of a disease process can take years and lots of money. (I worked as Research Associate for 17 years)
blue43059, personally, I think you're right to be suspicious of any doc that says he is the only source of a vit. or supplement. I NEVER buy these things directly form the my LLMD even though he offers them. He does NOT insist that I do and again, personally, I think that'a a good sign.
Right now I'm waiting to go back to see my LLMD to see what's next. And yes, again, I'm frustrated.
-------------------- Pam Live well. Laugh often. Love much. Posts: 53 | From Ohio - south/southeast | Registered: Oct 2005
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posted
Lyme Disease and coinfections in this day and age ARE still experiments.
Like my LLMD said " Its like having Cancer in the 1700's"
We are only about 30 years into Lyme Disease....we are the pioneers...
Of course the Dr's do not have all the answers, only the answers they know of at this point.
Its important for anyone who has Lyme to keep researching and pursuing what works for them...
Its noones fault, and the LLMD's who stick their necks out everyday to help advance as much as they can due to lack of funding , validation, or realization of this disease should be applauded.
I doubt in our lifetime, but in someone's, research will be what allows that perosn to be able to take a pill or do whatever, and erradicte this infection in one shot...
unfortunately we are part of that research just as many who suffered 100's of years ago from allfictions that are now easily cured were.
That why I feel there is never ONE answer to getting well..... there are many, and we all have to find our own paths...and more importantly never give up.
Posts: 437 | Registered: Sep 2004
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posted
All I can say is that I am very glad that my LLMD encourages Biofeed testing. He works directly with the results of this testing for effectiveness of the ABX we choose to use against what comes up. We make educated joint decisions on the sesibilty of what this is telling us. It sure has been better than throwing a dart at the dartboard.
Posts: 582 | From milwaukee wi | Registered: May 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I figured out I was going to be a genipeg after doing about 3 weeks of research --
Im glad I figured this out Early --
Because We are the Pioneers to this--
It is Important that you leave a record of your treatment that is avaiable to everyone -Easily-
I figure I have spent over 5000 hours reasearching these diseases
Thats Way to Long--
So to help get the Show on the Road --
I have designed a new Search Stratigy that will collect the info and place it on a personal page --
There will be Big benifets in speed -accracy-and the over all quality of info --
The set up will be easy--
It is a Win -Win situation -
I will write a futher post on it-
--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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quote:Originally posted by lou: This question was posed by a person who apparently only has medical experience with Lyme.
I suspect that if he/she were suffering from any number of diseases, it would become plain that there are these kind of problems in a LOT of other areas. For instance, cancer, parkinsons, ALS, CFS, fibromyalgia, etc, etc. It is a long list.
People seem to think that because medicine has some high tech features and can do gee whiz things like transplant organs, that medicine is a sure thing.
Dream on.
Ask the parkinson's patients who have had brain surgeries and are not cured.
Ask the people who don't survive expensive and painful cancer treatments.
Ask the people who have been sticking themselves with needles for years because of diabetes.
We all hope that the medical problem we suffer is the one they have figured out. A lot of us will be disappointed.
If we find doctors who have an open mind and will try to help us, even if the research is not being done by the people who should have been doing it. If you are looking for culprits, look at the federal health agencies who have failed in their job, and allowed insurance companies to stiff us.
Wow, that was harsh......no, I don't just have medical experience with lyme, I live it every day! As most of us do here.
I posted this b/c I just tried to get an app't with an LLMD within 300 miles and was told I had to wait 11 months for an appointment!
Then I found a second one who send me a booklet saying I had to pay, without insurance $350 for a one hour consultation. If I cancelled the appointment within 2 weeks of the due date, I still had to pay them $150!
And for every test, on top of the out-of-pocket expenses, I had to pay the doc $75.
I know a lot of you have good LLMD's and bless you, but many out there are taking advantage of us.
BTW, I ran into the same doc scams when I was told for 14 years that I had CFS. It cost me thousands of dollars in out-of-pocket medical bills. No cure.
I just wanted to see what others thought without naysaying. Posts: 867 | From PA | Registered: Jan 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I just talked to Dr. J in NC a few evenings ago about his political/legal situation with the medical board.
He said he had learned a tremendous amount over the past few years about treatment protocols and said he had gotten the treatment time in most cases down to 90 days.
I told him I was honored to have been one of the ones who was a guinea pig who helped work towards his current protocols.
Somebody has to do it.
Posts: 2276 | From NC | Registered: Oct 2000
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posted
My LLMD does not charge a lot and does not sell products. I don't feel he is experimenting on me. I feel he is applying the knowledge he has learned from other patients to helping me and then carefully listening to my experience to continue improving his methods.
He did tell me on my first visit that I would get better but it would take time. I don't know for sure if this is true but it sure helped me when I was really sick, and motivated me to be really serious about my treatment.
He doesn't talk much about diet, probiotics etc. but has been very interested to hear what works for me. He asks lots of questions and really listens.
No one knows the answers for sure but I have great respect for the LLMDs who are trying to figure it out and for the patients who are also trying to figure it out and are giving valuable feedback to LLMDs. hats
Posts: 956 | From MA | Registered: Nov 2004
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