posted
I was told by my doc that the Igenex Urine PCR test is the "Gold Standard" if its positive. The problem is that it frequently comes back negative even when the person is infected. But if you take it and it does come back positive then its about as good a diagnosis as you will get. Again this is just what my doc says.
Posts: 27 | From Boulder, CO | Registered: Sep 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
This is interesting. I'd like to follow everyone's comments.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Lymetoo, your opinion on coinfection tests? Also Igenex?
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bettyg
Unregistered
posted
bejoy, fry labatories is recommended highly for co-infections; igenex does too but HIGHER $$$.
posted
DO YOU REALIZE HOW BAD THIS LOOKS? WE ARE NOT PROFESSIONALS BY ANY MEANS! SO I DON'T KNOW WHY PEOPLE ARE GIVING THEIR VIEWS.
YOU NEED TO SEEK THE ADVICE OF A REAL LLMD AND NOT PATIENTS WHO THINK THEY KNOW IT ALL!!
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lymeloco
Unregistered
posted
THIS IS JUST A SUPPORT GROUP. NOT A PROFESSIONAL WEBSITE THAT HAS THE TRUE ANSWERS BY ANY MEANS!
DO ALL OF YOU REALLY THINK THAT THE ANSWERS THAT YOU ARE SEEKING ARE ON HERE?
WE ARE JUST PATIENTS LOOKING FOR OTHERS WHO ARE IN THE SAME BOAT AS OURSELVES. NONE OF ANY OF US HAS THE ANSWERS.
WHAT YOU REALLY NEED TO DO, IS LISTEN TO YOUR DOCTOR, AND IF YOU DON'T LIKE WHAT HE/SHE HAS TO SAY...THEN CHANGE.
WE ARE ALL IN THE SAME BOAT HERE. NOBODY HAS THE EXACT TRUTH, BUT WE ARE ALL LOOKING FOR THE SAME ANSWERS TO AN INCURABLE DISEASE.
LOVE AND HOPE WILL SEE US THROUGH AND FREINDS WHO ARE GOING THROUGH THE SAME THING WILL GET US THROUGH. WE ALL NEED ONE ANOTHER, SO PLEASE DON'T GIVE FALSE HOPE, BECAUSE I DO BELIEVE THERE IS TRUE HOPE FOR ALL OF US!!
would you go back up to where you started posting all tonight's posts in ALL CAPS, and copy them all to your word processor and CONVERT THEM TO LOWER CASE vs. all caps.
most of us neuro lyme patients, we can't read that and it's considered "shouting" at us, and boy you got on a roll there.
you could make all your small posts 1 post and just make sure you leave your double spacing in there once ALL TEXT is LOWER CASE please.
to edit, please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use " ", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "bold" codes so it's regular type text we read vs. the dark, harsh/painful bolding, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and bolding is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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quote:Originally posted by lymeloco: I COULD NEVER UNDERSTAND WHY ANYONE WOULD BE ASKING ANYTHING OF A SUPPORT GROUP!!
WHATEVER HAPPENED TO SEEKING THE ADVICE OF THEIR DOCTORS WHO ARE THE PROFESSIONALS???
WHERE ARE THE MODERATORS????
lymeloco,
The "Moderators" are right here ... and if you wanted a Moderator to review a Topic / post, why didn't you simply send one of us a PM requesting our help instead of posting 7 times that a user should only seek help / advice from an LLMD and never from other users of the LymeNet Flash BB?
The vision of the LymeNet Flash team is simply "Lyme victims helping Lyme victims" ... providing help, support and information. You apparently believe that help, support and specifically information should ONLY be provided by an LLMD and NEVER by another victim of Lyme and other TBD's who has experienced the symptoms, various tests, many varying treatments and the results, both positive and negative.
Our users gain valuable information from other Lyme / TBD victims via the information interchange that takes place here on the LymeNet Flash BB and they are able to use that information to enable a meaningful dialogue between themselves, as a patient, and their treating physician, ie: LLMD.
So, what's the problem? Why do you insist that users not acquire meaningful information via an interchange with other users of the LymeNet Flash BB but only seek information / advice from LLMD's?
You and I have discussed this, in detail, in the past via an exchange of PM's as follows: ================================================== lymeloco LymeNet Contributor Member # 7192 Icon 1 posted 22 November, 2008 01:20 AM Profile for lymeloco
Lou, why do you continue to let people try and promote things that you have know way of knowing if they work or not?
I am very upset that this continues on this website and can't understand why. Please enlighten me. Posts: 732 | From ma | Registered: Apr 2005
Lou B Administrator Member # 64 Icon 6 posted 22 November, 2008 01:35 AM Profile for Lou B
Hi lymeloco,
Well, there's no way to prove any treatment works to cure Lyme or other tick borne diseases.
What, specifically is the problem?
Are there specific Topic(s) or Post(s) that you take issue with their credibility? Do you subscribe to a particular "thing" that works and proves all other "things" will not work?
What, exactly, would you like me to do?
You are now "enlightened"!!!
Take care,
-------------------- Lou B - Posts: 2095 | From Totowa, New Jersey, USA | Registered: Oct 2000
lymeloco LymeNet Contributor Member # 7192 Icon 1 posted 22 November, 2008 01:51 AM Profile for lymeloco
No. Now you enlighten me. Why would you continue to let people lead others on when knowing that none of us know what can lead to a cure or not?
I believe the truth should come from their doctors and not from a website that pretends to know the truth. I hate to say this Lou, but sometimes this website look scares many, and what most want is a place that understands.
Do you understand what I'm talking about? There is no one cure or treatment but that should be left up to the professionals and not the public. Posts: 732 | From ma | Registered: Apr 2005
Lou B Administrator Member # 64 Icon 6 posted 22 November, 2008 02:03 AM Profile for Lou B
So, what specifically do you want me, as the Administrator of this website and Moderator of this forum, to do?
I'm reading between the lines in your response but it appears you want me to judge if what's posted is a valid treatment option or not ... specifically, you want me to censor.
Various users are going to post about the treatment(s) that worked for them or the treatment(s) they believe will work for them. Should we have a rule that there be no discussion of treatment specifics?
No one can "lead anyone on" unless they want to be lead on. I can not change or control the behavior pattern of any individual ... neither can you!
I'm tired ... going to bed! Goodnight,
-------------------- Lou B - Posts: 2095 | From Totowa, New Jersey, USA | Registered: Oct 2000
lymeloco LymeNet Contributor Member # 7192 Icon 1 posted 22 November, 2008 02:17 AM Profile for lymeloco
Your tired? Let me tell you about tired! You are right, there is no specific treatment for lyme and co.'s but to lead innocent people who are desperate for a cure to a never ending plight?
Why oh why Lou would you let this go on? I truly believe that you are a man of substance. Who wouldn't let people be fooled by such stupidity.
I would love to say what a cure is or what helps, but Lou, truthfully, I can't. Please address your people to talk with their doctors and NOT look for answers here.
I really thought this website was about connecting with people and NOT about knowing who really knows what. If that were truley the case, then I do believe that should come from our llmd's, don't you? Posts: 732 | From ma | Registered: Apr 2005
Lou B Administrator Member # 64 Icon 6 posted 23 November, 2008 01:15 AM Profile for Lou B
Hey lymeloco,
The LymeNet Board of Directors (I am a long term member) determines the rules and guidelines of what is appropriate to be posted on the LymeNet Flash BB.
You will notice we specifically address: 1. The information on the LymeNet System is provided "as is" without warranties either expressed or implied.
2. The information on the LymeNet system is not intended to be a substitute for an evaluation by a qualified health care professional.
3. Considering the real-time nature of this bulletin board, it is impossible for LymeNet to review messages or confirm the validity of information posted. Please remember that we are not responsible for any messages posted. We do not vouch for or warrant the accuracy, completeness or usefulness of any message, and are not responsible for the contents of any message. The messages express the views of the author of the message, not necessarily the views of LymeNet or any entity associated with LymeNet. Any user who feels that a posted message is objectionable is encouraged to contact us immediately by email. We have the ability to remove objectionable messages and we will make every effort to do so, within a reasonable time frame, if we determine that removal is necessary. This is a manual process, however, so please realize that we may not be able to remove or edit particular messages immediately.
Based on the above, what, SPECIFICALLY, do you want me to do?
The title of your PM is "Scams" ... please send me links to specific Topics / posts that you believe are scams ... I will review and take action, if appropriate.
Thanks and take care,
-------------------- Lou B - Posts: 2095 | From Totowa, New Jersey, USA | Registered: Oct 2000
lymeloco LymeNet Contributor Member # 7192 Icon 1 posted 01 January, 2009 12:08 AM Profile for lymeloco
Lou, I would never blame you, or the rest of your moderators. I just don't think everyone is listening to YOUR guidelines!
One should stop and think...WHY is someone looking for answers here? Shouldn't they ask there own DOCTORS??????????
I would be very concerned that a website who are not professionals, are giving advice and information. No wonder they think we are quacks! No wonder they think this is hysteria and everyone thinks they have lyme disease!
I feel at times that people with some of their advice has not helped in many ways but yet some have.
I know you and your wife started this website to help people, but over the years other members have taken it over for other reasons. Either I'm paranoid, or it has come down to money.
You have a member who promotes Mangosteen. Do you really believe it is an ultimate benefit? Why not eat the fruit? I would think that would be more productive in helping.
I lurked this site for a long time before I actually registered. I enjoyed making people laugh. If I remember correctley, if your wife is Angela, she even enjoyed coming on here before everything changed. So what happened?
I've got private messages asking me names of my doctors and I will NOT give it! Why are they asking such information, if you have SEEKING DOCTORS?
I do not blame you, so please don't ask me what or why about what you should or should not do. I really don't give a hoot, what you do.
I think YOU as a person and your wife are terrific people and I truly appreciate all that you've done for us. It's not YOU but others that have pretty much monopolized this website and have turned it into something others can't understand.
I have written what I've felt and I hope you understand. I do NOT blame you for what is happening. I want to thank you and yours for all that you've done for us, and wish you and yours...A VERY HAPPY NEW YEAR!!!!!!!!!! Posts: 732 | From ma | Registered: Apr 2005
Lou B Administrator Member # 64 Icon 6 posted 07 January, 2009 12:25 AM Profile for Lou B
Hi lymeloco,
Sorry for not responding sooner. I decided to take a few days off in the new year and only respond to critical issues ... now I'm back.
I believe we've discussed this (throughout the prior PM's in this thread) in detail, so I'll not burden you with more information.
Now, let me answer a few new items you've mentioned.
First, my wife (yes, you are correct she is Angela) did, in the past, Moderate the LymeNet Flash and posted frequently. She did not stop because anything about LymeNet changed and she continues as an active member of the LymeNet Board of Directors. Angela stopped posting because she now suffers from degenerative disk disease, which makes it very difficult for her to sit at her computer for very long. In addition, her priorities were re-focused on our grandson who was diagnosed with Autism, fortunately he's high functioning, he has Asperger's Syndrome. She has also supported me through my heart attack, serious heart problems and, in 2008, I was diagnosed with prostate disease cancer.
Second, Angela and I did not start this web site. I'm so very proud to say we were instrumental in providing the guidance and financial support (we are the primary fund raisers) that allowed LymeNet to be a viable resource for the victims of Lyme and other tick-borne diseases. The LymeNet story is here: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=3&t=006842
We continue our vision of "Lyme victims helping Lyme victims ... giving back the help we received"!
Take care,
-------------------- Lou B - Posts: 2095 | From Totowa, New Jersey, USA | Registered: Oct 2000 ==================================================
Again, the LymeNet Flash BB has enabled Lyme and tick borne disease victims to help other Lyme and tick borne disease victims and that vision has become a reality over the many years we have been operating and we have seen the results thousands of times. The exchange of information, the help and the support are available to everyone who comes here.
Thanks to all of you for the help, support and advice you provide one another.
Lyme victims helping Lyme victims!
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Excellent Lou--just excellent!!!
Go with God, Mamie
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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Wow, I'm so sorry that you have been greeted here on Lymenet with those responses from Lymeloco. Your question was a valid one and it did not warrant the type of responses you got from Lymeloco.
I tried to respond to you via private message here on Lymenet and I'm not sure that it worked. So, I'll reply again here.
Your question as to the best test for Lyme comes up alot, I think. It's discussed by new Lyme patients, old lyme patients, LLMD's, and patients yet-to-be-diagnosed.
I don't know anything really about the Stoneybrook testing. Whatever I have read about it, I apparently have quickly forgotten. lol
All of the Lyme doctors I have seen have used the Igenex Western Blot for Lyme testing. They have also used the CD57 Test from LabCorp, as well as other testing, my history of possible exposure, current and past symptoms, vital signs and neurological findings on physical examination, response to antibiotic treatment, etc. in making their diagnoses.
Working like this is called the Clinical Diagnosis. That is, LLMD's are encouraged by the CDC and the FDA and ILADS (to name a few organizations) to not rely solely on the Lyme blood tests to rule in or rule out Lyme diagnosis. They need to look at the entire picture of the patient.
I've read some of your previous posts and from what you have shared with us here, I understand that you are considering consulting with another LLMD to get second opinion. That you are not sure that Lyme should have been ruled out by your original doctor and that you are not sure that it is only an auto-immune, "mixed connective tissue" disease that you have.
I think you are very smart to get a second opinion! Many people with Lyme have positive ANA tests at some point during their Lyme illness. And many times that positive ANA status will revert back to normal, either on its own or with Lyme treatment.
I am one such person. I had a positive ANA for months. When I began Lyme treatment, my ANA blood results returned to normal and have remained that way with continued Lyme treatment.
Anyway, I'm just sharing this with you in case it might help.
I hope that the rude response you got here from Lymeloco have not frightened you away.
THere are alot of good, kind, and knowledgeable people here. I'm sorry you had to bear the brunt of one who was not so kind.
If there are any other questions that you'd like to ask, please feel free to ask them!
For what it's worth, sometimes questions about medical testing, medical treatment, illnesses, etc. get a larger response if they are posted in the Medical Section.
You could try and post this same question in a new post in the Medical Questions section and see if you get a better and larger response to help you make your decision.
Please let us know how you get on, k?
FuzzySlippers
Posts: 503 | From Maryland | Registered: Oct 2007
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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