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Friend (MD) is Disagreeing with my Diagnosis Now!
My friend is an MD and just called to tell me he spoke with a neurologist friend who said Lyme is extremely rare in NC and that Igenex is notorious for false positives. He said I need to go to Duke or a large academic center and see both an infectious disease specialist and a neurologist that work together. What am I supposed to think?
I am about to start treatment and the naysayers are coming out of the woodwork. My scientific mind is reeling. There are tons of professionals on each side of the coin and one is saying black while the other is saying white. This really frustrates me. Why would these people get better then, the ones here and the ones I've seen on the documentary?
Are there statistics out there to state the number of people that get better with long term antibiotic treatment vs. the number that do not?
Is there any compelling evidence that Igenex Labs is faking their labs? It can't be about being too lax in their guidelines for Neg vs. Pos. b/c I was positive by their protocol AND the CDCs protocol. So, they would have to flat out lie on our reports. Why wouldn't I have tested positive with the other two WBs I had by other labs if they, too, used the stricter guidelines of the CDC? I still tested positive on the ELISA at Johns Hopkins that was followed by a negative WB.
I am still getting treated soon, regardless. I am easily frustrated with conflicting information. I mean, I am already riding the rollercoaster and I haven't even started the treatment yet. Sigh. There are so many smart people out there, I can't believe we are still questioning one little bugs' power. If I get treated, and I make an obvious recovery, I am going to be visiting each and every one of these naysayers, in person, anywhere I have to go. They will get educated if it kills me:) Now, back to being brave.....
I am about to start treatment and the naysayers are coming out of the woodwork. My scientific mind is reeling. There are tons of professionals on each side of the coin and one is saying black while the other is saying white. This really frustrates me. Why would these people get better then, the ones here and the ones I've seen on the documentary?
Are there statistics out there to state the number of people that get better with long term antibiotic treatment vs. the number that do not?
Is there any compelling evidence that Igenex Labs is faking their labs? It can't be about being too lax in their guidelines for Neg vs. Pos. b/c I was positive by their protocol AND the CDCs protocol. So, they would have to flat out lie on our reports. Why wouldn't I have tested positive with the other two WBs I had by other labs if they, too, used the stricter guidelines of the CDC? I still tested positive on the ELISA at Johns Hopkins that was followed by a negative WB.
I am still getting treated soon, regardless. I am easily frustrated with conflicting information. I mean, I am already riding the rollercoaster and I haven't even started the treatment yet. Sigh. There are so many smart people out there, I can't believe we are still questioning one little bugs' power. If I get treated, and I make an obvious recovery, I am going to be visiting each and every one of these naysayers, in person, anywhere I have to go. They will get educated if it kills me:) Now, back to being brave.....
Hope, is this the article you are thinking of? It's from 2007, 18 months ago, entitled "A Critical Appraisal of 'Chronic Lyme Disease' ":
http://content.nejm.org/cgi/content/extract/357/14/1422
(There is also at the bottom of the first page a list of more recent articles citing to the article.)
Note that Wormser and Steere, Defenders of the Status Quo, are co-authors of the article. My favorite part is the teeny print at the end disclosing conflicts of interest by the authors. These people have staked their careers, finances and reputations on the phrase 'there is no evidence that...' and are disinclined to look beyond their stated positions. Grrr.
http://content.nejm.org/cgi/content/extract/357/14/1422
(There is also at the bottom of the first page a list of more recent articles citing to the article.)
Note that Wormser and Steere, Defenders of the Status Quo, are co-authors of the article. My favorite part is the teeny print at the end disclosing conflicts of interest by the authors. These people have staked their careers, finances and reputations on the phrase 'there is no evidence that...' and are disinclined to look beyond their stated positions. Grrr.
"The Journal of New England Medicine has a famous one that all conventional doctors seem to be citing when treating it and that is that they rounded up all the folks with "post lyme" tried antibiotics for six months in a double blind research study and found that it didn't help. So, with so many of us still sick, it looks like we need a new drug altogether. And that has yet to be determined."
This is bothersome. I would like to read that study, b/c I'm still fearing treatment a little. Do you know what the title of that article is?
This is bothersome. I would like to read that study, b/c I'm still fearing treatment a little. Do you know what the title of that article is?
There simply needs to be more research and there isn't any that I'm aware of -- seriously. I know Brian Fallon at Columbia is doing something but they make us pony up the money to participate so forget it. They never returned my calls either way.
University of Louisville is in the process of patenting their test. And it is definitive. That will at least tell us we have it or we don't.
As for curing it, I believe it's possible. But it seems different for each person. Some people require this or that combo of antibiotics for years and years to be cured. And others another combo. So, since it makes no sense whatsoever, more research and then more research is needed. The problem is the symptoms vary from person to person. While some have headaches and buzzing in their feet, someone else has joint pain and brain fog. So, if you cannot agree on what you're treating, it tends to stall the research. That's what I read happened and was told that from a doc. They need to have baseline symptoms or some such thing for a double blind research project to get off the ground.
The Journal of New England Medicine has a famous one that all conventional doctors seem to be citing when treating it and that is that they rounded up all the folks with "post lyme" tried antibiotics for six months in a double blind research study and found that it didn't help. So, with so many of us still sick, it looks like we need a new drug altogether. And that has yet to be determined.
University of Louisville is in the process of patenting their test. And it is definitive. That will at least tell us we have it or we don't.
As for curing it, I believe it's possible. But it seems different for each person. Some people require this or that combo of antibiotics for years and years to be cured. And others another combo. So, since it makes no sense whatsoever, more research and then more research is needed. The problem is the symptoms vary from person to person. While some have headaches and buzzing in their feet, someone else has joint pain and brain fog. So, if you cannot agree on what you're treating, it tends to stall the research. That's what I read happened and was told that from a doc. They need to have baseline symptoms or some such thing for a double blind research project to get off the ground.
The Journal of New England Medicine has a famous one that all conventional doctors seem to be citing when treating it and that is that they rounded up all the folks with "post lyme" tried antibiotics for six months in a double blind research study and found that it didn't help. So, with so many of us still sick, it looks like we need a new drug altogether. And that has yet to be determined.
Whew, I love debating this stuff, it needs to be done. We are the people that are going to find answers and bring Lyme awareness to the forefront. Who else will, other than those suffering the symptoms? We care the most, obviously.
I have to get that book pronto. I'm glad to see that I'm not the only one questioning the lab differences, politics, etc. The more we keep up this type of dialogue, the closer we get to the truth. Time will tell as well, but I'd like to get better ASAP of course. I guess that's why we are left with choosing our path of treatment using our own instincts and opinions. Customizing our treatment in a way that makes us most comfortable sounds like the best plan and I think we need to attempt a scientific approach to everything we read, experience, etc. I'm really considering developing a spreadsheet to track my symptoms prior to, during, and after treatment. This type of thing may already exist (?). The more we discover, the less future Lymies have to suffer.
I have to get that book pronto. I'm glad to see that I'm not the only one questioning the lab differences, politics, etc. The more we keep up this type of dialogue, the closer we get to the truth. Time will tell as well, but I'd like to get better ASAP of course. I guess that's why we are left with choosing our path of treatment using our own instincts and opinions. Customizing our treatment in a way that makes us most comfortable sounds like the best plan and I think we need to attempt a scientific approach to everything we read, experience, etc. I'm really considering developing a spreadsheet to track my symptoms prior to, during, and after treatment. This type of thing may already exist (?). The more we discover, the less future Lymies have to suffer.
Actually, it's not unknown how the CDC/IDSA diagnostic criteria were arrived at -- there are others here more scientifically inclined than I who can explain better why the testing is so messed up, but the book Cure Unknown tells the twisted story in detail, esp in pages 310+. It's worth reading, if for no other reason than to understand the extent to which we the afflicted are held hostage by a tangled mass of politics, money, and pride. It's not a simple difference of opinion, but a much more complicated story. Once I understood the depth of the problem, I began to understand what I was up against and my decisions about treatment were easier.
I agree with everything you've said: that the criteria are arbitrary (and frankly unknown how they were arrived at to begin with) and that there are various factors that can give measurement variation.
I was just stating what seems to me that in general, Igenex finds more positive response than the other labs. I believe that goes along with the belief by many that it is also more valid than other labs. For me personally, I don't know what to make of it. Since IDSA and ILADS are so far opposed, it is also not surprising that different labs with different views (IDSA and ILADS philosphy) are also likely to yield different results.
I was just stating what seems to me that in general, Igenex finds more positive response than the other labs. I believe that goes along with the belief by many that it is also more valid than other labs. For me personally, I don't know what to make of it. Since IDSA and ILADS are so far opposed, it is also not surprising that different labs with different views (IDSA and ILADS philosphy) are also likely to yield different results.
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