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» LymeNet Flash » Questions and Discussion » Medical Questions » Posting test results in your signatures

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Author Topic: Posting test results in your signatures
WildCondor
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I've noticed many of you posting your test results in your signature lines. Just want to make a comment about this. In my opinion, when you post Western Blot bands, PCR's, etc. It is sending the WRONG message to new posters and those reading this forum that they need positive blood tests in order to confirm they have Lyme disease. Lyme is a CLINICAL DIAGNOSIS, and we should do everything in our power to drive home that point.

It would seem logical to put something like "+for Lyme, babesia, Ehrlichia, bartonella," etc,. but to put the actual Western Blot bands and results seems misleading, especially in a signature line. This is just my opinion, but we need to send a strong message to people and present a united front as far as Lyme being a clinical diagnosis. With the testing for Lyme being wildly inaccurate, it does not seem wise to be doing this.

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sutherngrl
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I would have to agree with this also. Lyme is a clinical diagnosis and the test results should not be so important that they are posted in your signature lines.

Believe me, I know you were so proud when you got them, for validation in blood so to speak; but I totally see WildCondors reasoning.

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coltman
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How do you rule out lyme if its clinical diagnosis only?
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Beautiful Disaster
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Well I was actually one (under another name) who started what turned out to be an enormous thread about this very same issue.

I couldn't agree with you more. However, I had to make a new name for personal reasons. Well, to be honest...any time I have asked advice EVERYONE ON THIS BOARD ASKS ME IF I'VE HAD A POSITIVE TEST!!!!!!!!! I got so dang sick of everyone asking me if I've had a positive test or seen an llmd like I'm a newbie or something, that I included it into my siggy.

It was getting waaaaaaay too repetitive! I got so tired of explaining that "Yes, I've had positive tests" and if it doesn't matter, then why did everyone ask me this? It never stopped. Or the fact that I have said that I can't afford an llmd due to money, I got so tired of saying it!

I thought people would remember eventually but I know there are a lot of ppl on this board.

But, when I made the thread, the same (maybe a bit more vocal) as this one right now, a LOT of ppl jumped down my throat and said that it's to let people know who has what by which lab and there is a reason for doing so.

I made ppl upset by saying that it seems like we wear our positive bands like badges and sometimes it seems to be a contest of who got the most positive by which lab. I don't understand WHY the lab is relevant except, to me, if you get a positive from Labcorp or Quest that makes you a little bit more part of the legit Lyme club.

For me, I HATE posting these things on my signature, BUT I have gotten so tired of re-explaining myself about if I have positive tests or not, if I have co-infections, or "Why don't you just call your LLMD?"....so I just put it all in my siggy.

**Edited to add: I was never one to feel "proud" when I got my positive tests...I think that's not a very good word to use. It brought me piece of mind for about a week...and then I got back to wondering if it's really Lyme! I never flaunted it until everyone asked me over and over again if I had a positive test. If posting the results to stop repetitive questions is bad, then why does everyone ASK IF WE'VE HAD A POSITIVE TEST? When I rejoined under another name, I was really surprised at how many ppl asked me this considering it's "supposed to be a clinical diagnosis".

Why don't we ask ppl to stop asking about testing if it's REALLY not important? Why in the welcome package to newbies do we tell everyone to ONLY have their blood drawn by IgeneX? Why is IgeneX in business if it's a clinical diagnosis? Why do LLMD's use it if they are the ones making the clinical diagnosis?

Sorry, I'm just playing Devil's advocate here but I think it's a little hypocritical to say "Don't post your results" when everyone keeps asking if we've had a positive test. If testing doesn't matter, then lets stop telling ppl to WASTE HUNDREDS OF DOLLARS BY GOING TO IGENEX who probably gives out way too many freakin' false positives if you ask me.

--------------------
---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.

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sutherngrl
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No one is saying don't test for Lyme. Just that the test are very inaccurate and cannot be used to make a diagnosis. The diagnosis should be made by a good LLMD. And any good LLMD will tell you it is a "clinical diagnosis".

I can see how it could be misleading to those that don't understand this fact, when they come here and see everyone posting there test results. A newbie might think, they must not have LD, since they didn't get a positive test result.

I know I had no bands to begin with, and didn't get any until after starting treatment. If I had not known about the clinical diagnosis, I would have accepted what my GP said, that I don't have LD because my ELISA test came back negative.

So I see how posting test results can be misleading to new ppl. Also, the statement needs to be made that the reason so many of us are ill is due to the fact that we went so long undiagnosed. And for many that was because they tested negative, then suffered years before discovering that LD is indeed a clinical diagnosis.

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WildCondor
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Another thing, and I don't mean to sound harsh here, but, posting Western Blot results really seems like an unintelligent thing to do considering even the CDC recognizes that Lyme disease is a clinical diagnosis. Lab data is meant to be used as a supportive means only. Posting the test results is also ammunition to the powers that be who do not like LLMD's, and can be destructive to our cause, used against all of us, plus labs like IgeneX, so for many reasons, I hope those of you who have the results of a WB, PCR, or god forbid, an ELISA in your signature should think about removing them and instead substitute what infections you have. If people are asking over and over about a test and you are telling them, then it is still sending out misleading info, which gets spread down by word of mouth ending up sending the wrong message. There are too many reasons to list why this is irresponsible. The newbie links need to be edited, clearly they have been misleading. They need to be edited and the links updated. What to do if bitten, and how to remove a tick should be right at the top along with the ILADS Lyme disease treatment guidelines. Needs some organization. [Smile]

I agree that some LLMD's tend to use too much testing. I think testing is only warranted if a patient is not sure if they were ever bitten by a tick, and yet have many Lyme symptoms. It can be used to help guide the doctor towards a Lyme diagnosis, or not. If you already know you have Lyme, and you know you were bitten, then I do not think testing makes much sense. I tend to follow the principle that if the treatment will be the same regardless of what a test might show, then why waste $$ on testing, just do the treatment.

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Geneal
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When I first found this board the posting of so many others' positive bands

On a Western Blot actually scared me.

I thought I couldn't possibly be as sick as some of the others here.

I also thought that maybe I didn't actually have Lyme

Because of my one little positive (or reactive) band that Quest found.

It wasn't until I did my homework and realized (with the help of my LLMD)

That those with the fewest positive bands were often the sickest

As our immune systems were not fighting back and trying to make antibodies.

I agree with the thought behind not posting bands.

Hugs,

Geneal

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METALLlC BLUE
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Personally, I think people should post whatever conveys what the individual wants others to know. If you want to post your results, do it. If you want to post a quote from Bertrand Russel, then do it. As long as you don't violate TOS, you're fine in my book.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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aiden424
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[QUOTE]Originally posted by METALLlC BLUE:
Personally, I think people should post whatever conveys what the individual wants others to know. If you want to post your results, do it. If you want to post a quote from Bertrand Russel, then do it. As long as you don't violate TOS, you're fine in my book. [/QUOTE


I agree! Maybe they need help to interpret the test results. Anyway who cares??

Kathy

--------------------
You never know how strong you are until being strong is the only choice you have.

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Abxnomore
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I agree with those above. People should feel to post what they want, as long as it does not violate the TOS. Those that are new will get the hang of this board and the illness. If they are not inclined to stick around and learn, well then posting test results really won't affect them one way or another.

Most of us here know that Lyme is a clinical dx and that testing is used to support a clinical dx. Newbies need to read and learn like we all have and the serious ones will. Plus, many of us give of our time to generously help and welcome newbies, when they post and explain things to them. There is plenty of pinned info on the top

of all sections of this site for newbies and any newbie that comes here via the "seeking a doctor" section gets more information than they ever wanted, including that lyme is a clinical dx and all the necessary information regarding testing.

If people are coming here to learn, then they will learn what those signature test results represent by educating themselves like we have all had to do.

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Lymetoo
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I agree with Wild Condor for her reasons and for the reasons Geneal stated.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Pinelady
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I tend to think most people have had a negative

test as well as a pos at some time or another. I

think it is very critical to inform people looking

that people who have tested neg could in fact

have borreliosis and co infections. Or they would

not be here looking for why they are sick. MANY

do not know this. I DID NOT know this. If they

see that and say "Hey they say neg but are still

here", I could have this too and look further.

And not go blindly like I did and accept a

negative test and go for years more looking for

answers. If no one else sees it that way I am

sorry. Actually I don't like posting my personal

information but if I can let one person see that

it is possible to actually be sick and not just

depressed, or lazy or crazy it is worth it to me.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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kareamber
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I originally put my results on my Signature because I was also tired of posting it in questions. Most of my questions in the beginning were asking for help to interpret my results. And I honestly couldn't remember my results off the top of my head. It made it easier to just put in in my sig.

But if it bothers people I'm sorry. I guess I could take it off now that I understand the WB more and don't need help intrepreting...

But honestly I don't think it should matter. I don't think people are "showing off" their results. I think most people are doing it with good intentions.

--------------------
IgeneX IGG POS 30+ 31++++ 41++
IGM 30+ 31+++ 34IND 41IND 83-93IND
Quest NEG IGG 30 and 41 only

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kareamber
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If anything I should add that my WB from Quest was NEG showing only Reactive bands at 30 and 41... that way people can see that it is VERY common to test NEG and still have lyme.

--------------------
IgeneX IGG POS 30+ 31++++ 41++
IGM 30+ 31+++ 34IND 41IND 83-93IND
Quest NEG IGG 30 and 41 only

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Pinelady
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kareamber I think you should post that also. If they refuse to improve it is their loss. And not our fault.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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kareamber
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Added it.

--------------------
IgeneX IGG POS 30+ 31++++ 41++
IGM 30+ 31+++ 34IND 41IND 83-93IND
Quest NEG IGG 30 and 41 only

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WildCondor
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You guys are missing the point. Lyme disease is a CLINICAL DIAGNOSIS, and fixating on western blots is not the right message to send.
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aiden424
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quote:
Originally posted by WildCondor:
You guys are missing the point. Lyme disease is a CLINICAL DIAGNOSIS, and fixating on western blots is not the right message to send.

Why is posting your test results in your signatures fixating?? Frankly, I've never looked at most of them. I don't think anyone is implying that Lyme isn't a clinical diagnosis.

Kathy

--------------------
You never know how strong you are until being strong is the only choice you have.

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Lymetoo
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Always think of the newbies.

--------------------
--Lymetutu--
Opinions, not medical advice!

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BHealthyNow
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I am a newbie... and I will tell you that no one would have EVER considered Lyme Disease if my test hadn't come back positive. I don't live in an area where it happens. So these things help me because it's all I've got to go on. Sure I've got a lot of symptoms, but the test results, they give me something to hold onto right now. (And I'm learning that others have very different experiences).

--------------------
Lyme, Bart, possible Babs
Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron
Been on nearly every antibiotic since 10/09

About 60% improvement. Dizziness, air hunger remain.
http://lemonandlyme.blogspot.com

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sometimesdilly
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Wild Condor-

i think responses to your observation fall in the same 2 categories as do many other topics-

folks aware of and thinking about the big picture, which includes knowing that even what seems the most innocent thing can come back to bite more than a few of us,

and those who just don't see things from that perspective.

same old same old.

i agree with you, for what that's worth. most often, though, perhaps because I'm not a newbie,my eyes glaze over seeing that info posted and i wonder why the poster thinks the info is important enough to include it in a signature.


--dill

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Cindy Ss
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Doesn't bother me, in fact if I see someone that has posted the same numbers as I have on my test I feel like I have something in common with that individual even if I never message them personally. (silly I'm sure)

Who would actually legally use the posting information anyway? Yes I am newbie, but we are all just names, nicknames, states, or other??? This is the internet there is no proof that anyone here is actually real in a court of law is there? Anyone of us could just be some bored individual that frequents sites like this. Not that anyone would on here, but...would someone actually try to trick anyone on this site into some sort of legal action or use this site in a court of law against Dr. or patient?


Could or would the so called powers that be actually find someone that has posted there test results and haul them into court for posting testing results???

What is the harm, doesn't bother me, if I'm missing something haven't read it hear. I'm for whatever makes you feel better as a person and in your treatment...

Having this disease and reading people's post on this site has broken my heart as well as given me encouragement and at times taken away my hope for recovery. At times it is even hard to come here. Dr's say to stay positive, sometimes this site makes it hard to be that way.

I don't comment or post much, and when I do ask for help sometimes I get it and sometimes I don't.

I'm just learning here as alot of us.

I don't get what the harm is if someone wants to include the info or not...

Cindy

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WildCondor
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Cindy and others who don't seem to understand this concept. You need to educate yourselves on the political aspects of Lyme disease. You should do some research about the court cases Lyme patients have brought against doctors, some of them class action lawsuits, and the persecution of LLMD's and corresponding court trials. Lymenet is referred to as "LymeNut" and people with harmful intentions DO read this forum, you should be aware of that. As for posters, of course we are real, and we are not just numbers and nicknames, many of us have met in person over the years, and we are real life friends. We are the faces of Lyme disease. As for siggys, its up to you, but again, most of you do not even know what the IGG and IGM even mean, so posting the info is misleading in many cases. It sends the wrong message. Be newbies, but be intelligent newbies. Educate yourselves. It is your responsibility to know what you are taking about and why.
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Pinelady
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Wildcondor I understand what you are saying-

"You guys are missing the point. Lyme disease is a CLINICAL DIAGNOSIS,"

I wish that was the way it is, but they will not

let us have it the way it should be.

I don't think the big guys in high office care

either way and since their most useful argument

is there is no evidence and doctors continue to

lose their license's, and they have failed to

come up with a exacting test, they have left us

with little else but hope of a specific band.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Alana
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To some Wildcondor's comments might seem tough, but IMO she is right.

Lyme and cos are CLINICAL diagnoses....even according to the CDC (too bad IDSA docs has not yet read that...perhaps they have a collective processing deficit??)

IMO it does little to nothing to post neg/pos bands in a signature line. For example, if I were reporting results about one of my daughters, she'd be negative except for band 41 on QUEST for a long time, which essentially is meaningless. She ended up glowingly CDC+ after a short course of treatment.

Bottom line is that she was treated and diagnosed based on symptoms, exam, history and lab tests ... ie, a clinical dx.

And me...well I light up every lab's positive test results board. I am the Christmas tree of tick-borne illness. (In fact, I am considering a gig at Rockefeller Center this year...of course ony if my contract specifies lime green lites and a very large standing fee...hey I do get very tired). I know, I crack myself up.

Point being....eventhough I test positive for pretty much every coinfection, I am not nearly as sick as my kids or many of you, who test negative.

I understand that getting those positive bands helps to validate a diagnosis, but this doesn't mean a whole lot to anyone other than those of us here who understand the bands and the ILADs docs.

If you want to post your history in your sig line, why not say what you've been dx'ed with, how long you've been ill, and what you've been misdiagnosed with. That would be a lot more helpful to newbies IMO.

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Pinelady
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Do we have any ideas how many doctors still use Elisa as their first line for testing?


http://www.canlyme.com/labtests.html
What makes this test so misleading is that many doctors accept high readings as an indication

that the patient must really be sick. This logic is exactly backwards. If a patient is really

infected with lots of bacteria, that means they have a lot of bacterial antigens floating around

in the blood that are complexing free antibodies. So, as free antigen increases, free antibody

decreases. Since the ELISA test detects only free antibody, a negative test might actually indicate

a more serious infection. Many times, I have seen totally asymptotic patients with ELISA titers

over 1000 be treated as though they were on death's doorstep simply because they had a high

titer, while patients with borderline titers who are practically disabled are ignored, because a

low titer is perceived as meaning less infected! These conclusions are erroneous and actually

opposite to the truth, which is that a high titer means greater natural immunity.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Pam08
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I am insulted that anyone would think that I posted test results out of pride. I don't think anyone here is in anyway "proud" of their results as some have suggested. What a horrible thing to imply. I don't think anyone here is proud to have lyme disease or proud that it has ruined their lives.

I think the reason that people post their results is for informational purposes. When people here ask for help or advice others tend to ask if they had a positive test and what coinfections they have etc etc.

They ask these things because it helps them to better answer their questions and give them advice. People get tired of answering the same questions over and over so they just put it in their signature lines so that it is already there for people to see and respond to them accordingly.

I have seen this on many other message boards for other illnesses as well. I previously belonged to a couple CFS groups online (before I knew I had Lyme) and members were always asking that you fill out your profile with info about your illness so that they could better answer your questions.

So this isn't something new and it isn't to flaunt results. It is for informational purposes so that other members can give you the best advice possible.

I understand that people want newcomers to know that it isn't all about test results and that is fine and a valid concern. BUT people post them for a reason so please do not imply that it is to flaunt them in some way.

Thanks,
Pam

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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springshowers
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To throw in some perspective.
On this board and others I have been URGED to put up all the details of my test results in order to help people best answer and support my questions.

I have done it both ways and see no big issue either way. It is not like it contradicts or does not contradict the concept that is being made of clinical diagnosis.

So.. I say it does not matter either way ...

And sometimes though when people spend a lot of time on these boards they get very involved in way too many details of the people and posting and controversy and that just all becomes a negative for everyone overall.

Sometimes it takes taking a step backwards and looking at the large picture to see that..

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WildCondor
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Pam, if you go back and read beautiful disaster's post that is not what it meant.

Some of you newer posters keep defending the signatures by saying it is for "informational purposes". Exactly my point, it is a mini trend here that is spreading misleading and uneducated information to the general public. Let your personal feelings and pride take a back seat to the facts, and we can all work together to get the right information out there. Again, you guys need to educate yourselves more on all aspects of this disease. It is our collective responsibility as Lyme patients to disseminate correct information.

Why don't you put something encouraging and positive in your signature, something you identify with that can help others. How about putting "Lyme Disease is a Clinical Diagnosis" down there. [Smile]

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Melodymaker
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Human nature being what it is, we somehow feel more secure if we have a positive blood test.

I for one, had no positive blood test. However, my 25+ years of Lyme Disease followed such a classic progression that it could not be ignored.

I was shocked last year when I was researching Lyme for my husband, that this was in fact what I have had all along! Never expected such a thing!

Everyone is entitled to their opinion, and I believe Wildcondor has a very valid point. If you agree , then take the test results out of your signature and just post what you've been diagnosed with.

If you disagree then keep it.

As for being asked the same questions over and over again, create your story on a word document, and just copy and paste when you need to explain something to yet another question.

There are solutions for everything. =)

--------------------
Wishing You Showers Of Blessings!
Lyme since Fall 1983 = Diagnosed Summer 2008
IV Rocephin 7 weeks Stopped due to drug fever
Now doxycycline
"For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11

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Topaz
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Everyone should post whatever they wanna post!


To each his/her own is what I always say. Well, I don't always say it but you know what I mean...

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Truthfinder
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I see good points on both sides of this.

*** ``Lymenet is referred to as "LymeNut" and people with harmful intentions DO read this forum, you should be aware of that.'' ***

But if that's true, then if everyone just puts `Lyme is a clinical diagnosis', the opposition just assumes that nobody here at LN has any positive tests for Lyme, that there is no persistent infection in most of us, and that bolsters the evidence that LLMDs really are misdiagnosing a lot of patients.

Since people tend to interpret information the way the WANT it to be, I'm not sure eliminating WB or Elisa test results is sending the right message either.

Maybe the suggestion of just stating positive or negative on various tests would suffice.

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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Cindy Ss
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If what is trying to be said here is that posting bands confuses new posters, it didn't me.

I was confused about anything and everything with this disease when I came here (I still am) Who isn't?! Haven't been here long... (4 months) but I don't think this is harmful to anyone.

Lots of other things that people post about others treatment protocol not being accurate (low dose abx, high dose abx) having patient doubt their top rated Dr.'s. I think does more harm than this...

Keep your bands in your signature if it is what you want to do...we can make the decision as individuals to read it or not...

Sorry don't get it...

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btmb03
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I for one find people's results in their signature to be extremely helpful as I can relate their results to their thread and the various feedback they get to their post or just as a method of sharing their info with the rest of us.

I never once felt that anyone posting their results felt an extra sense of "pride"...perhaps *some* sense of relief for their baffling sx..but that's to be expected and completely understandable.

I know that Lyme is a CLINICAL DIAGNOSIS and many of us have basically become debilitated due to "evidence based" medicine...but this doesn't take away from knowing what's "out there" re: results.

For those of us too sick to even *think* of attending support group meetings, talk to other patients, etc. LN is our only source of patient experiences. And thanks to y'all it's been a godsend.

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bettyg
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quote:
Originally posted by WildCondor:

How about putting "Lyme Disease is a Clinical Diagnosis" down there. [Smile]

condor, that was cute; i noticed YOUR OWN signature line does NOT have your quote in. lol [Smile]
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Pam08
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I may be a new member to this group but I am NOT new to Lyme. I have belonged to other lyme groups before I joined here and I also discovered this group before I became a member. I know about Lyme and the controversies surrounding it. I have been studying about Lyme for probably close to two years.

Don't just assume that new members don't know anything about Lyme Disease or the controversies surrounding it. Some new members may not know much about Lyme yet but others have already done their research before joining here.

It can help to know if people have been tested or not and when they got sick and if they are seeing an LLMD etc etc. That makes it easier to answer their questions and it allows people to skip all those questions. Then people don't have to ask us if we have been tested and if we are seeing an LLMD and go through the whole advice process where you tell them about Igenex and to see a good LLMD etc etc.

Yes it isn't only about the testing but it sure as heck helps to have a positive test. When you have a positive test it is easier to get help from doctors and move forward with treatment. It definitely makes things a lot easier.

So we definitely should suggest that people get tested for Lyme because if they get a positive result it will make it easier for them to get a diagnosis and treatment. If they don't get a positive result fine they still need to keep at it and find a good doctor and look into getting a clinical diagnosis.

So to me it is good information to know and probably why people ask. They want to know if you have been tested or not etc so that they know where to start their advice to you. Do they start with the normal advice they give to the newcomers or can they just dive right into the problem at hand.

I am a newer member of this board but when people see my signature line they know that I have already been tested and am in treatment with an LLMD and what infections I have etc. So they know how to better answer my questions. They know where I stand and don't have to ask for any background info or go through the usual questions and newcomers advice.

So I still stand by what I posted earlier and still think it is ok for people to post their results if they want to. It can be helpful to those trying to give advice. If people don't want to post their info that is fine too.

I think it should be up to each person to decide if they want post their results or not. I think it is fine either way.

Take Care!

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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Beautiful Disaster
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This whole thing is absolutely ridiculous. When I joined this board in 2008 (under a different name of course), ppl had their results in their signatures. I was immediately informed of the CONTROVERSY regarding Lyme and the test results NEVER EVER threw me off.

When ppl join this board, everyone flocks to inform them about Lyme and how controversial it is. The test results do not throw them off. People are not stupid. If they joined the board, I am sure they have researched Lyme on their own too and know a few things about it.

To say that people flaunt their test results is rude, insensitive, and just plain ignorant. Shame on whoever said that. That's insulting. I am SOOOO proud that I rarely leave my house, hurt so bad I'm welled up with tears, and too mind blown with pain to be the kind of mom I WANT TO BE TO MY 3 YEAR OLD SON.

My life has been stolen away and I honestly have NO HOPE of it ever returning. I can't afford treatment so I literally sit here and ROT. And you make it like I'm proud of it? Give me a break.

For the last time, IF LYME IS A CLINICAL DIAGNOSIS, THEN HOW COME EVERYONE KEPT ASKING ME IF I HAD A POSITIVE TEST? THAT'S WHY I POSTED THEM IN MY SIGGY. I originally had two quotes in it.

What other people on the board said was that the test results helped them when giving advice. You need to understand that people that join are immediately informed about Lyme, TRUST ME! Everyone explains that a negative test doesn't mean you don't have Lyme. It's one of the main talking points here.

Quite frankly, I would worry more about how people here seem to ALWAYS tie EVERYTHING to Lyme. I think that's more dangerous than anything. It's more dangerous than your concern over newbies not understanding that Lyme is a clinical diagnosis. I think we are too quick to tie everything to Lyme. I think it gets kind of ridiculous.

Negative test? You still have Lyme. Autoimmune disease? It's from Lyme. John Travolta's son dies. Someone said that we should contact the family for a brain autopsy to look for LYME. Someone dies with flu symptoms, we think it's Lyme. We have a huge list of symptoms and it could be from ANY THING IN THE WORLD, the symptoms touch on just about anything that could go wrong with the human body, but it's Lyme. Have anxiety? It's from Lyme. I think that it gets a little bit ridiculous and sometimes wreckless. I'd be more concerned about a newbie coming on with a negative test or one band, or IND bands and people will come right out and say "You have Lyme. Find an LLMD". What if it wasn't Lyme and something more serious? I'd be much more concerned about that aspect of it instead of people harmlessly posting results in their siggys because they get tired of explaining themselves.

If testing is such bull, then we should never ever ask if they've had a positive test. It's kind of hypocritical to ask if they've had a positive test but then say that testing doesn't matter.

I'm sorry if I sound harsh but that's how I feel and I still feel the sting of the comment made about feeling "proud" of getting a positive test. I just got tired of explaining myself, especially since I've been a part of this board since early 2008. I got tired of saying over and over again that I had been on Rocephin. I got tired of saying I didn't have money for an llmd.

So, it's all in the signature. And it's not coming off. It's not offensive to anyone. There's a lot of things that I don't agree with on this board but I weigh the positives against the negatives and choose to stay. I know by me having different opinions about Lyme and disagreeing sometimes with the dialogue that goes on in this board isn't enough for me change the way the board is ran.

So I come to the board to get help and appreciate the help that I get, but I surely don't make this board my life...

I don't need to change anything about it. I just take it or leave it. Sorry, but I disagree with your theory about it and I want to continue leaving my signature the way it is, and if someone wants to make me take it off, then I'll just leave. It's completely petty.

By keeping this topic going you are alienating the ppl that are already here. It's just going to keep getting more hurtful and no one is going to change anyone's mind. Why can't we drop it? There's nothing good going to come out of keeping the topic going. We all know where each other stands and for what reasons. We aren't going to change anyone's minds. So, lets just drop it. Sometimes I think people want to argue. It's over. Let's move on. Can we do that?

Just because we disagree about one thing (or maybe a few) doesn't mean that we can't co-exist on this board. We don't have to make everything on this board our lives. It's here to get help and give help. It's up to the newbies what they think about Lyme. Everyone here makes it CLEAR that Lyme is a clinical diagnosis.

--------------------
---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.

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kreynolds
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Umm..... I feel that people should post what they want in my opinion.....

Everyone knows Lyme should be considered on clinical diagnosis, but for those that get the positive bands it saves time not having to repeat them to others hundreds of times.....

I put it in my signature because my memory is shot and if someone asks then it is RIGHT there.

As for the "newbies" which I feel is a harsh term for anyone ill with a disease, the ones that are truley interested and want to get better will stay on the site to gain knowledge no matter what is in someones signature.....

JMO....

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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WildCondor
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Oh good grief, now you guys are posting Quest labs. WOW.

FYI- A good healthy debate is educational. That's what forums are for, learning. This DID get blown way out of proportion with people feeling personally attacked by comments made. The main point was lost here, and instead defended to death with no logic. The term "newbie" is standard internet form lingo for new poster, it's fact, not meant as an attack! Post whatever you want, yes, I am all for free speech and no censorship, just think about what you are putting there and why, and for the last time, think about what message you are sending out to the public by posting test data. Just as long as everyone remembers that Lyme disease is a clinical diagnosis, and we work together to educate everyone. When I first joined here 11 years ago, if there were not Veteran Lymies like myself around to answer questions, I would have never gotten better. Right now we have new people trying to educate new people, and it is very scary to watch the wrong information about Lyme and it's treatment being presented. That is the point behind why I posted this topic. I want to see people get their lives back, and get diagnosed and treated correctly. The posting of tests sends a confusing message and often sends posters on a wild goose chase. Hopefully folks will read more and educate themselves as to why this is so important. I will help as much as I can, I am in Medical School now, and believe me there is MUCH to learn and you can never stop learning. Namaste. (END TOPIC)

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Pam08
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I think most people here are educated on this topic. Just because people are new doesn't mean they are uneducated about this and just because they don't agree doesn't mean it is because they are uninformed.

I understand why you think it is important and I think everyone else does as well. But not everyone sees things the same way.

It is definitely important for people to understand that Lyme is a clinical diagnosis and that a negative result doesn't necessarily mean that you don't have Lyme Disease. However, I still don't think that having results in your signature line is hurting the cause.

Like another person said...it is up to the new people to do their own research and learn about Lyme. The members here definitely let people know in no uncertain terms that Lyme is a clinical diagnoses. I think that message is very clear on this board to everyone that shows up here asking questions or researching.

When I first started researching Lyme Disease a couple of years ago that was one of the very first things that I learned everywhere I went. It became clear to me that Lyme testing is unreliable and that it needs to be a clinical diagnoses.

I think we all agree that it is important for people to be aware that Lyme is a clinical diagnoses. I don't think anyone is disagreeing with you on that. What we don't agree on is the effect that signature lines have on people that come to this board.

In my opinion...I don't think that posting test results in signature lines is hurting anything or causing people to think that you only have Lyme if you have a positive test.

People have posted valid points on both sides but in the end we all form our own opinions on the topic. Everyone has their own opinion on this and that is ok.

To each his/her own.

WildCondor...I want you to know that I do appreciate the veteran members and their advice. I also appreciate that you are trying to look out for us all and that is why you are posting this topic. I know you just want people to know that test results aren't everything. Thank you for being here and trying to help everyone.

I know you were trying to end this topic and I agree that is a good idea. I just wanted you and everyone else to know that the reason some of us are disagreeing is not because of a lack of information or research on our part. I think most of us are very educated on this topic.

Take Care Everyone!
Pam :-)

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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Ocean
Frequent Contributor (1K+ posts)
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Wild Condor,

No comment about topic, but I wanted to say CONGRATS for being in Med school!! I assume to become LLMD???!!

Your Lyme story was one of the first I read last fall before I saw an LLMD and I was floored when I read it.

I hope that I will be able to follow in your footsteps someday...if not MD, then NP (I'm already an RN).

Great job and keep it up!!

[group hug]

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Lou B
Administrator
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LymeNet Users,

Wow, this Topic got somewhat heated ... and for no good reason except differing opinions and, of course, everyone has their opinion.

I suggest listening very carefully to WildCondor ... I have known her for a very long time and I respect her knowledge about Lyme and other TBD's.

I'm now closing this Topic.

Take care all,

--------------------
Lou B
 -

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