posted
I've been meaning to get this off my chest for a while now, and I hope I don't offend anyone.
But I STRONGLY recommend that if the only doctor you can see is a lyme illiterate doctor, for what you suspect, or know through more accurate, outside testing is lyme, that you do everything in you power to convince them your sickness is from exposure to a tick bite.......EVEN IF YOU DON"T REMEMBER SEEING A TICK.
IN OTHER WORDS LIE IF YOU HAVE TO.
Play it. Make up a believable story. Stick to it.
You might try to play ignorant about lyme. Maybe say something like you've heard that "ticks can make you sick" blah blah blah.
Insist that you want to take antibiotics for awhile just to be sure. "Don't they give doxycycline to people for acne? Couldn't I take it for a few weeks just to be safe"....blah,blah.... ..or "my cousin works in the Peace Corp. and they give him/her Doxycycline every day the whole time they're in Africa. What could it hurt?" etc.
The fact of the matter is, once you go on record as having an exposure to a tick bite, that opens a small crack in the door. Once established, tell the Doctor that unless they are willing to personally enter into your record that in their professional opinion you ABSOLUTELY DO NOT have lyme, that you want to be treated for the 5% chance you might, based on that tick bite.
Remember, according to the world of lyme illiterate doctors, the tick has to be very small, and it has to be attached to you for at least 24 hours. You would also have to be in some rural or rugged areas, hunting, camping, hiking, working etc.
There. I feel better now.
With lyme there is no time to waste doing anything but being treated. Screw medical politics! Posts: 294 | From nevada | Registered: Sep 2005
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quote:Originally posted by cave76: I'd have to think on this a bit before I'd feel comfortable about *advising* a public board to do that. Would it have a downside? Like *us* being seen as a group that advises people to lie?
[/QB]
True. And you're right, Cave...It would be fighting lies with lies!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
others do it. Look at all the addicts hooked on pain meds....like that oxycotin (spelling) they lie all the time, so much so that most dr wont write a script for more then a few days supply now...but it took them years to catch on.
In the case of lyme we are fighting for our lives. If i had known what i do now when i first went to my ducks.....i would have requested doxy instead of the zmax he gave me which i had a reaction to and the rest is history.
-------------------- "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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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I understand how you feel, but there are many bacteria that could be causing our illnesses, not just Lyme.
As desperate as we feel, it is best to find a LLMD who can test and be sure they are pursuing this illness appropriately and effectively.
I agree with many here who have posted that to get well will require more than just abx. Are we qualified to start mixing all these things?
Since I became sick last 8/05, I have become a master researcher of Lyme disease. Since 1/06, when I was diagnosed with RA, I have also become a master researcher of RA. The symptoms of Lyme and RA (rheum. arthritis) are identical. So much so, I have to stop sometimes and check the title of the article I am reading to remind myself which disease I am reading about.
The main bacteria suspect behind RA is mycoplasmas. 2nd is Lyme and 3rd is streptococus. Studies of the synovial fluid of RA infected joints show only 3 bacteria. Mycoplasma, Spirochetes and Strep.
My only Igenex bloodwork showed I have had Lyme but do not have it now. The LLMD said clinically I have Lyme symptoms. So maybe I do or maybe it is a different bacteria altogether. Treatment is different for each. My research has revealed I am just as likely to have mycoplasma and/or strep causing my joint pain or all 3.
My point to this is: Lyme could be your problem or something else or both. In any case, self treating or coercing the doctor to medicate by giving him false information is foolish even if it is very tempting and I truly understand your motivation. I live in a town that has no integrated medicine and I travel 4 hrs to see the LLMD. 3 hrs for the AP dr (RA treatment) 2 hrs to the biological dentist and integrated dr who will chelate my heavy metals.
But to trick a local dr into treating me according to my estimation of what needs to be done? No thank you.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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geniveve
Unregistered
posted
sorry but i just couldn't. besides going against my faith, it's just not in me.........
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Welcome has a point.
I didn't remember a tick bite when I went ot my first doctor. He of course asked if "I had a tick bite". I said "no I coulldn't remember one".
BUT, I had a what I thought was a spider bite about 10 months before, and never thought about it when I saw him. I didn't see the beast and ASSUMED it was a spider. I had a red welt for months on my foot, but never made the connection
Perhaps if I had remembered the bite my positive ELISA would have meant something. I was refused treatment because my knees weren't swollen.
I removed a dear tick from my leg shortly afterward and took it to my GYN, the only other doc I had at that time. She tried to refuse treatment becasue I didn't know how many hours it was attached, but did finally write a short script as a precaution.
It was only recently that I realized a tick and spider bite can look the same.
Even more recently a llmd told me that she believes spiders are transmitting TBI.
Of course in 2000 doctors weren't thinking other insect vectors to ask the question "What insect bites have you had."
Going to a doctor with an open mind is a good idea, but it isn't easy, especially with all the info we have access to these days..
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
While I have a tendancy to agree with the above...I mean after all...the ducks and mainstream medicine are all lieing to us when they give us two weeks of doxy and send us on our way...or completely deny being able to treat us...etc etc
Luvs 2 have you ever had the HLAB27 blood test for RA?
Also you claim your WB came back I assume IGG positive...which all ducks tell me all the time means "yes, you have had lyme but no longer have it"...which is total bull.
Yes there are other bacillus that can give us similar symptoms...the catch is...which one gives all the symptoms...cuz if you have one or more of something that does'nt match up you have to assume you have lyme. I wish it were not the case.
One has got to put them up on a board and compare them against each other. Even then it would be difficult to differentiate.
For the layman. ergo a LLMD would best be able to diagnose and treat... Without that...self diagnosis would be the next best thing cuz there's just too much politics involved with this disease. This should not be the case...but alas it is exactly the case.
I have not had to lie about anything...the ducks I have seen thru out my illnes on the other hand HAVE lied to me countless times and continue to do so...
This area should be the focus on your decisions.
IMO.........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The SYMPTOMS are due to nutrient imbalances initially caused by the infection(s). Nutrient imbalances caused by pathogens/eating poorly...make us feel (and act) horrible.They even effect our "thinking" since it takes several nutrients to make the neurotransmitters.
Ask any teacher what it is like to try to teach kids the days following Halloween! Sugar imbalances cause difficult to manage behavior, for EXAMPLE.
Last night I was watching an infomercial and learned that despite the current controversy about whether or not glucosomine chondrotin works...it is dependent on the AMOUNT consumed, based on body weight.
And recently researchers (Webmd) have reported that the statin drug, Crestor, not only lowered cholesterol, but to the researchers amazement, the plaque filled blood vessels actually CLEARED! But...it took HIGH doses to do this...and time.
I repeat...serious nutrient imbalances effect the way we think, behave, feel.
These imbalances (multiple)still must be corrected ***even WHEN the infection is gone.***
It's the "when it's gone" part that is so difficult to determine!
As hard as it is to do...if we (all of us) want to feel well and live long productive and happy lives, we have put a stop to all unhealthy habits and eat only "good" foods, get out in the fresh air and sunshine (some), drink only "good" beverages, take walks/other forms of exercise, laugh, learn some relaxing techniques, pray...
Sorry, but I really believe in honesty. I expect honesty from my doctor and so, I will be honest with him.
This is a JOINT effort to get well. It starts with "taking ownership" of the disease and PARTICIPATING in your return to health, not relying completely on whatever pills a doctor prescribes for you.
The "magic" is not in the pills...it is inside all of us. It is called the WILL to live. The body IS capable of healing itself IF given the right "support" to do so.
Where there is a "WILL" there is a way.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I wouldn't recommend lieing about any aspect of your health. What if it isn't lyme....it is possible to have other health problems. What if you had a more serious health issue with more deadly ramifications if not treated promptly.
Like heart problems not related to lyme...but since lyme can cause heart problems...you'll lie about a tick bite...so the doctor is steered towards the diagnosis you want...but maybe the wrong one causing your death or death of a loved one.
When I go to my doctor it is with a problem I want them to sort out. I have preknowledge before hand...as I usually google things...but I listen to the doctor and see if that is near or close to my findings.
If the doctor felt you were lying...I think it would definitely negatively affect his view of you, which could never be fruitful. People can read lies better than most people think, and doctors are notoriously intuitive individuals.
I think when your life is at stake the only smart thing to do is form a good relationship with a doctor who you trust and who you can be honest with.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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posted
Well now I've gone and stuck my hand in the hornet's nest.
I knew I'd provoke some serious debate! Bravo!
Almost all LLMD's emphasize that the earlier you get ABX TX the better your chance of beating this disease.
That being said, it bears noting that the seeming majority of folks on this board and others, have not been so lucky.
And this, despite what appears to be some very concientious efforts to get proper medical treatment from their "health care providers"
Not to digress too much, but this menntality of being "provided for" is a rather new phenomenon in human history. And I for one am not enamored with the idea, for a lot of reasons I'll save for another time.
But one I'll mention is this, it places the paying "customer" at a physical and psychological disadvantage.
The doctor (literate nobility) tells the patient (ignorant peasant) what they will or will not do for them, and the patient (paying customer) has very little or no recourse?
And this arrangement is based usually on the one doctors clinical opinion?
I'm sorry but that is an unstable commercial arrangement. And it's definitely an unacceptable MEDICAL arrangement!
I can assure you from experience, in most of the third world, right now, as you read this, all sorts of ABX and other meds are being given out to people a lot less "sick", often times merely as a preventative measure!
Oh I know, many will say "we just can't be handing out ABX willy-nilly..blah,blah,blah.". This statement blatantly fails to recognize lyme disease as an EPIDEMIC.
The so-called experts always say we need to control the dispersal and usage of ABX, "SO THAT WHEN AN EPIDEMIC ARISES we'll have medicine that will be effective." Well HERE'S YOUR EPIDEMIC!
I think many of us lymies are too sick to be righteously indignant about the absolutely dismal and criminal "treatment" we have "receieved" from those we pay to "take care of us".
"I appreciate your opinion doc, but my opinion is that I am sick. Now if your opinion is I'm not sick, then this time your opinion is wrong. Now I'd like to take an extended course of antibiotics just in case (which by the way, leaves very little room for the dreaded "bacterial resistance" they're always preaching.)."
The world has changed. Just like the music industry will never be the same again because of the internet, neither will the medical industry. Just look at the posts on this board. Most of us, as a matter of intelligent survival, are "self-medicating" to some degree or another based on our internet research.
Survival comes first.
The insulting phrase "self-medicating" is meant to insult you back into that position of the ignorant peasant, where you believe you are incapable of understanding what's happening to you, and you actually start to consider that the illness just might be "all in your head"!
The internet is INFORMATION. Information is power. Yes, some of it is wrong, or questionable. But so is the so-called "qualified" information that doctors operate on everyday, for years, " We don't have lyme disease around here", "Only ticks that have been attached for 24 hours can infect."," Your ELISA test was negative. You don't have lyme." etc.
I am willing to believe in myself. And I'm willing to believe in most of you, that for the most part we are NOT IGNORANT PEASANTS. That instead we are able to understand what our bodies are telling us, and are able to understand what we need.
Are there those who will make mistakes? Yes. But I choose to err on the side of personal choice. BTW, as a point of reference, in 1990 our (your) schooled medical "providers" (doctors) were responsible for 93,329 deaths due to negligence according to the Harvard Medical Practice Study (1990).
The Medical Profession is tightly controlled, not for your safety, as they preach, but for commercial reasons. Strictly limit and sparingly dole out accessability = raise and control the price.
And to be certain, the insurance industry is right there as well, making certain that their investment in the lucrative medical industry is not threatened too much.
Yes, lying to your doctor is wrong. And recommending it to others is questionable. Posting it here is risky, although anybody with ill intent toward us lymies will find plenty of other stuff posted here to fuel their evil fire.
But apparently telling the truth isn't working too well either.
The treatment for lyme disease is relatively low risk considering the horrendous effects of untreated infection.
If you have something else wrong with you, that you don't know about, the lyme treatment is unlikely to affect it one way or another. Are there exceptions? Yes. But everything is a matter of statistical probabilities, and the probablitity of compounding other health problems that are not manifest at the time are low.
The probability of compounding other unknown health problems with UNTREATED LYME are exceedingly unacceptable for any rational person!
Let's put it this way. If you knew you had lyme (Igenex/Bowen etc), but the ducks you saw claimed you didn't, and next week there was an announcement that some company had developed a 100% effective 5 day treatment for lyme disease, however, only those people who had been diagnosed with CDC defined lyme disease were eligible to receive it, what would you be willing to do to acquire the treatment?
No sir! Considering all of the above and more I'm of the opinion that you do whatever it takes to get well, for yourself and those who love and count on you. The rest of the BS be damned.
Just one persons opinion.
PS. My posts are in no way designed to elevate antibiotic treatment to a level it does not deserve. There are many researchers, Marnie in particular, who have a pronounced grasp of the mechanisms of this disease and how to address it with non-pharma supplementation.
This post is a rant to be sure. In particular, it is a rant aimed at the failed mechanics of our health care industry with regards to lyme disease. As Marnie intimated, this disease effects a persons thinking. Be that as it may, I believe my point is still made.
I believe in honesty too, until you're wrongfully acccused. Then if honesty doesn't work, you do what you have to.
As devastating as this disease is, I just want to make sure that those who are unsure about what to do recognize that they are not alone with the tough decisions.
posted
The antibiotic treatment for lyme disease is fairly safe.
If you have something else wrong with you, that you don't know about, the lyme treatment is unlikely to affect it one way or another. Are there exceptions? Yes. But everything is a matter of statistical probabilities, and the probablitity of compounding other health problems that are not manifest at the time are low.
The probability of compounding other unknown health problems with UNTREATED LYME are exceedingly unacceptable for any rational person!
Let's put it this way. If you knew you had lyme (Igenex/Bowen etc), but the ducks you saw claimed you didn't, and next week there was an announcement that some company had developed a 100% effective 5 day treatment for lyme disease, however, only those people who had been diagnosed with CDC defined lyme disease were eligible to receive it, what would you be willing to do to acquire the treatment?
No sir! Considering all of the above and more I'm of the opinion that you do whatever it takes to get well, for yourself and those who love and count on you. The rest of the BS be damned. -
Just one persons opinion.
PS. My posts are in no way designed to elevate antibiotic treatment to a level it does not deserve. There are many researchers, Marnie in particular, who have a pronounced grasp of the mechanisms of this disease and how to address it with non-pharma supplementation.
This post is a rant to be sure. In particular, it is a rant aimed at the failed mechanics of our health care industry with regards to lyme disease. As Marnie intimated, this disease effects a persons thinking. - Be that as it may, I believe my point is still made.
I believe in honesty too, until you're wrongfully acccused. Then if honesty doesn't work, you do what you have to.
As devastating as this disease is, I just want to make sure that those who are unsure about what to do recognize that they are not alone with the tough decisions.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Welcome, in your case, you wouldn't have to lie.
Just saying you had spent a lot of time in an area likely to be loaded with ticks, and describing your symptoms should make any doctor try to make a differential diagnosis, including Lyme disease.
You should insist on being tested for co-infections and remind the doctor that tick-borne diseases can be debilitating and even fatal.
Lying to doctors can get one in big trouble. Once they don't believe you, they won't believe anything you say and won't want to treat you.
quote:Originally posted by Ann-OH: Welcome, in your case, you wouldn't have to lie.
Just saying you had spent a lot of time in an area likely to be loaded with ticks, and describing your symptoms should make any doctor try to make a differential diagnosis, including Lyme disease.
You should insist on being tested for co-infections and remind the doctor that tick-borne diseases can be debilitating and even fatal.
Lying to doctors can get one in big trouble. Once they don't believe you, they won't believe anything you say and won't want to treat you.
Ann - OH
Only in a perfect world.
Maybe "lying" is the wrong word. Perhaps "leading" for the sake of proper treatment is a better word.
Unfortunately, I have had to "lead" because the ducks just recite the usual pap.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Not being a poopoo here but lying to get your way will bite you in the a*s later on. Always not right away but it will.
Remember Oh what a web we weave when first we practice to deceive?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Magic--The ducks already PooPoo Us. Not to mention, how DO they prove what we say is not so....as in the tick was on me over 24 hrs, etc?
Welcome....I am willing to believe in myself. And I'm willing to believe in most of you, that for the most part we are NOT IGNORANT PEASANTS. That instead we are able to understand what our bodies are telling us, and are able to understand what we need.
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
MEG - because they will decide a clinical diagnosis is NO LONGER an accurate way to diagnose a bunch of LIARS....and they will go back to tests that once again aren't that accurate.
A clinical diagosis can only stand up if the folks are trustworthy. Once the docs and ducks no longer have faith in the patient pool we go back to only tests being the definitive way to diagnose.
Lucky people like myself who passed the tests would get treatment, while everyone who failed does not.
Believe me people can tell if folks are lying. A tick that was likely to infect you would leave a mark. You can only get so far with this method and you will get caught, and the doctor will be quite p*ssed to say the least.
I for one believe if a person IS sick they will get treated. It may not be treatment that they want or feel they need but they will get treated.
If you NEED to lie then maybe you need a different kind of MD than LLMD.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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posted
Rather than lie, I would simply get on the internet and find an online pharmacy. No I have not done this -- yet.
Then I would start looking for an LLMD.
Would also start the Healing Lyme protocol.
Based on the initial reaction hubby had to the herbal protocol from Beating Lyme Disease with Alternative Medicine (Dr J in Kansas) I think antibiotics would have totally incapacitated him at that time rather than just ending up in the ER 6 times and the hospital 4 times within a couple of months.
And Marnie is right -- supplements are essential as well. Without the COQ10 from early on (a whole year before diagnosis) I think hubby would have been permanently committed to one of the psych facilities he visited. As the non Lyme literate neurologist (a former neurosurgeon) said -- hubby's brain was literally burning up. At one point in time MRI's showed brain atrophy which has been reversed by the correct good fats and IV Phosphatidylcholine.
It might be tempting to lie to get meds, but it is not necessary and I wouldn't trust a non LLMD to know what meds to prescribe in the correct doses. Too many docs can't follow simple instructions and don't really listen to the patient.
Hubby just spent 3 hours this morning trying to figure out why his insurance was being billed for a Western Blot test. Eventually found out that his urologist who he sees once per year called the hospital and added the test on to some other bloodwork.
Still not sure if the doc was simply trying to be helpful or what the motive was. Hubby had told the doc that our PCP was 5 1/2 hours away and that his Lyme doc was in Missouri. So we are stuck paying the 20% balance on what is most likely a totally worthless test plus now insurance most likely has more ammo for their post-Lyme autoimmune movement disorder hypothesis.
My advice -- stay away from duck docs and even some who you think aren't ducks may end up causing you harm.
Finding a good PCP is almost as difficult as finding a good LLMD.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
hi since i've been there and done that, i feel i can just throw my comments out.
i've been dealing with strange symptoms for about two months. i have been to two e.r., opthamologist, pcp, neurologist, have had, cat scan, mri's, blood tests, eng, nothing diagnosed.
when i went to the md, for abx and kind of exagerated a bit, i had a pupose in mind. LYME. i figured when i was on zpac i herxed and started to feel better and although two ELISA were negative, antibiotics would not hurt me.
i think when all tests start proving negative, and you live in a highly ticked area, history of bite, symptoms that wax and wane, it won't hurt to get on a course of antiobitcs. but, i think it's important to rule out other illnesses that "mimic" LYME. so for people to just go to md and "fudge" because their symptoms fit and they had no tests wouldn't really be helpful to the person. however, antibitocs, unless your allergic, won't hurt you but you don't want to get into the addiction phase and keep thinking it's LYME when you see no change.
i imagine for chronic lymers it's different. but for the newly diagnosed or recently bit, antibotics "should" start to change your symptoms if that is in fact what you have.
i don't know if i have lyme. i suspect it since i live in mass, pulled off a tick and found a few others, and because i started to feel better with a zpac.
it's really difficult being in "cyperspace" sometimes, people can be very "convincing" that you have lyme and not some other illness. I notice that some people post and people respond, definately sounds like lyme, but to be honest, when you take into account someone's age, symptoms that persist, and low exposure to ticks you hate to see them follow an illness that they probably don't have.
i think doctors know a days are so resistent to patient input and i think they see alot of people who spend hours on web md and think they know what's up and some people really do, so they are reluctant to be the inferior and say, yes your right you have lyme let me treat you.
funny thing, yesterday at doc's, resident told me most people who get lyme don't need to be treated because they get the virus and then it goes away.
karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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quote:Originally posted by MagicAcorn: MEG - because they will decide a clinical diagnosis is NO LONGER an accurate way to diagnose a bunch of LIARS....and they will go back to tests that once again aren't that accurate.
A clinical diagosis can only stand up if the folks are trustworthy. Once the docs and ducks no longer have faith in the patient pool we go back to only tests being the definitive way to diagnose.
Lucky people like myself who passed the tests would get treatment, while everyone who failed does not.
Believe me people can tell if folks are lying. A tick that was likely to infect you would leave a mark. You can only get so far with this method and you will get caught, and the doctor will be quite p*ssed to say the least.
I for one believe if a person IS sick they will get treated. It may not be treatment that they want or feel they need but they will get treated.
If you NEED to lie then maybe you need a different kind of MD than LLMD.
"I for one believe if a person IS sick they will get treated."
uhhhh?.....really!? Not in my experience......nor with most others on these boards and elsewhere.
"A clinical diagosis can only stand up if the folks are trustworthy."
Wawawhaaaat!? You are kidding ....right!?
I can count on my two hands how many folks out of the many more I know who actually got "clinically diagnosed"!!! That's a JOKE!
The point being that these ducks are ignorant because they are arrogant.
That's the primary reason why they aren't getting with the program.
So you have to learn to work within the environment they create.
Many of us don't remember a tick bite.
Some of us have TBD's from an attachment LESS THAN the mystical 24 hour rule.
Many of us present with symptoms which don't fit into the limited criteria which the ducks accept as evidence of infection.
Many of us finally get to take faulty tests which the ducks use to their ignorant advantage to "disprove" our illness, then they label us as somatizing patients (hyperchondriacs) and on and on and on..........!
My point is that when you have supplemental evidence of TBD, like a partial positive WB, and a reasonable understanding of what your health is SUPPOSED to be like, and what it is like NOW, and you run into this wall of arrogant ignorance, it is the wrong time to be giving them the information they need to kill you.
Once they label you the wrong way you'll be in a real struggle to get un-labeled and treated! Meanwhile (for some it's years!) a whole bunch of damage will have occured in your body!
Make no mistake, YOU ARE IN A FIGHT FOR YOUR VERY EXISTENCE........any misdiagnosis is a direct threat to your life no different than someone threatening you with a knife...........you may survive by doing nothing or giving the attacker what they want, but that survival would be BY ACCIDENT because the odds are stacked against you. Me? I'd rather fight to change the odds.
Antibiotics may not be the final answer, but they may give you a fighting chance to push back the bacterial load so some of your biological systems can start working against the keets!
And again, antibiotics are not very likely to aggravate most other illnesses in a negative fashion!
Posts: 294 | From nevada | Registered: Sep 2005
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quote:Originally posted by firepipersnurse: hi since i've been there and done that, i feel i can just throw my comments out.
i've been dealing with strange symptoms for about two months. i have been to two e.r., opthamologist, pcp, neurologist, have had, cat scan, mri's, blood tests, eng, nothing diagnosed.
Starts to narrow it down a little bit doesn't it? Yet still no clinical diagnosis? Bet you don't get one either. Hope you do though.
when i went to the md, for abx and kind of exagerated a bit, i had a pupose in mind. LYME. i figured when i was on zpac i herxed and started to feel better and although two ELISA were negative, antibiotics would not hurt me.
i think when all tests start proving negative, and you live in a highly ticked area, history of bite, symptoms that wax and wane, it won't hurt to get on a course of antiobitcs. but, i think it's important to rule out other illnesses that "mimic" LYME.
Such as????
so for people to just go to md and "fudge" because their symptoms fit and they had no tests wouldn't really be helpful to the person.
Not exactly what I "suggested"
however, antibitocs, unless your allergic, won't hurt you but you don't want to get into the addiction phase and keep thinking it's LYME when you see no change.
i imagine for chronic lymers it's different.
According to most of the main stream medical community there is no such thing as a "chrnic" lyme infection?
but for the newly diagnosed or recently bit, antibotics "should" start to change your symptoms if that is in fact what you have.
What if you start feeling worse, does that mean you don't have lyme?
i don't know if i have lyme. i suspect it since i live in mass, pulled off a tick and found a few others, and because i started to feel better with a zpac.
it's really difficult being in "cyperspace" sometimes, people can be very "convincing" that you have lyme and not some other illness. I notice that some people post and people respond, definately sounds like lyme, but to be honest, when you take into account someone's age, symptoms that persist, and low exposure to ticks you hate to see them follow an illness that they probably don't have.
i think doctors know a days are so resistent to patient input and i think they see alot of people who spend hours on web md and think they know what's up and some people really do, so they are reluctant to be the inferior and say, yes your right you have lyme let me treat you.
They create that environment.....not us. Screw em!
funny thing, yesterday at doc's, resident told me most people who get lyme don't need to be treated because they get the virus and then it goes away.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Have any of you seen the TV show "House"? Dr. House believes that all patients lie and he does not trust anything that a patient tells him. I find that this is not an unusal attitude amoung allopathic doctors.
I also find that the majority of allopathic doctor's think that either a. The patient has done too much research and is modeling their symptoms on what they think will get them drugs
b. Patients are not very smart. They couldn't possibly know anything so there is no point in listening to them
Personally, I do my best to be as truthful as possible. That said, sometimes I have no choice but to withold info or stretch the truth.
Good example, my brother told his doctor's at the V.A. the truth about his history and now they refuse to give him ANY pain killers for severe diabetic neuropathy. All this because he told them that 30 years ago he was addicted to heroin while in the service. It was a few month period out of his 50 year life but he pays for it daily. He was a young stupid kid who was all mixed up for a very short time. Even after this disaster, he still continued to answer questions honestly until bitten again and again.
Another example, my brother's liver function tests have been horrible and he is too sick (IMO, with untreated lyme) to go on treatment for his liver according to the VA so they have done NOTHING to help him. All the while, his liver disease is progressing to irreversable stages of disease.
Via muscle testing I found that phosphatidyl choline and some other supplements would be very helpful. 6 months later, the doctor took liver tests and was shocked to note that his liver function was almost normal. My brother told the doctor that he was certain that the improvement was related to the supplements he was taking (nothing else has changed). My brother's memory is very bad and he couldn't remember the name of the main supplement. Believe it or not, the doctor demanded that he go off all supplements immediately. Ha!!! Not bloody likely!!!! The doctor has never even wondered since then what my brother was taking. They simply do not care if he suffers and dies or not.
The other day on the phone my brother told me that he will be very careful what he tells them from now on because he is suffering for telling the truth. I fully support his decision.
I think we all have to use our judgement. I agree that we are not doctors and that other things can cause our illness which need to be checked out. I also feel that if we have to lie to get treatment then so be it. We KNOW that a tick bite is dangerous. If it were my daughter who was bitten by a tick and the only way I could get reasonable treatment was to lie, well so be it. I will not let her life be ruined by some ignorant doctor.
That said, again, I do not lie to my LLMD nor would I. It is only under dire circumstances that I would lie and I hate doing it but I feel sometimes there is no choice.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by meg: If they're ALREADY diagnosing clinically, you won't HAVE to beg for abx or exagerate.
Magic:I for one believe if a person IS sick they will get treated. It may not be treatment that they want or feel they need but they will get treated.
I think there are many here who would disagree with this statement! I can't tell you how many doctors/ducks I saw before treatment!
Clinical diagnosis = someones "educated" opinion.
And the CDC states that tests are not to be used to confirm or deny the existence of a Lyme infection.
I believe since I'm the only one that lives in my body, I am the first one most likely to know when something is seriously wrong.
In my experience doctors are rarely more qualified to use Occam's razor than your average HS graduate! Or like someone here once put it, "Infectious Disease doctors know less about lyme disease then you do when you present to them with symptoms."
Posts: 294 | From nevada | Registered: Sep 2005
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They do already!
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You are kidding ....right!? 
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