posted
I know there have been ongoing discussions regarding the reliability of testing and interpretation of test results, etc. Thought people might find this story as interesting as I and thought I would share...certainly a story we've heard before.
Spoke yesterday to a woman whose daughter has been left paralyzed by Lyme, has a feeding tube in (likely for life) and continues to have cognitive issues as well. She has been treated....but the damage may be irreversible at this point.
This is a VERY LONG and complext story so I'll just try to keep it brief. At 11 years old, she had a tick-bite, decline began after tick-bite and after a year of torture for this family with no answers, she slipped into a coma and the mother was sure her 12 year old daughter would die. Trust me when I tell you the parents were amazing and utilized every resource they could get their hands on. Of course, her lyme tests were not CDC positive but Igenex did catch some bands (I'm getting the details). For this reason, the mother kept thinking it had to be Lyme (doctors saying no) and kept pushing (she did consult with Dr. Jones who was devastated at how far her disease had progressed byt he time he saw her).
Anyway, during this ordeal, the little girl had her spleen and appendix removed (didn't help her later diagnosis of babesia of course) and the mother sent a sample to Igenex for Lyme PCR and guess what...POSITIVE. The doctors dismissed the test results because they came from a "quack lab" and never re-ran the test anywhere else. This at one of the "best" children's hospitals in the world.
This mother and daughter are amazing. I asked if I could use her story and whether she would be willing to have the appendix re-analyzed at a 'non-quack lab' (hey, if this is what we have to do to 'shut them up' then so be it) and she agreed (I'm willing to pay the cost). I'm just thinking that if we can put this childs story and medical data package together and distribute this accordingly, maybe it would help 'the cause' some.
Anyway, just wanted to share the story and see if anyone had any further ideas....
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
How sad.
The test results are what they are. Dr. Harris has no interest in making them up. His lab meets or exceeds the same standards as everyone else's labs. I get so sick of hearing this.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
So maybe this is MassGen, where Allen Steere has poisoned the water? No one there, faced with a serious case of late stage lyme, is going to help.
The problem is not IgeneX, it is the people who tell such lies and are so criminally incompetent. My view of the medical establishment now is so poor, that I think this must be systemic, and predictive of their responses in other areas. I no longer expect clear thinking and intellectual honesty in any disease. Maybe this is too pessemistic, but when things like this happen, and there are no consequences, no accountability, how else is the public to interpret them?
Posts: 8430 | From Not available | Registered: Oct 2000
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I think it's right that there's no accountability. Parents are accused of things like Munchhausen's, etc, for their suggestions. This poor family.
Dr N.H. at Igenex will answer any questions, any time, about his lab's methods and reliability. I don't have any suggestions on what best to do with this information, but perhaps he would? A very kind man, I've spoken to him several times about my own lab results.
Posts: 3528 | From US | Registered: Apr 2007
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I'd also be curious to know what hospital this was in. MassGeneral is not all bad. I actually got admitted there for a very unusual finding on a CT scan (pneumatosis - free air in my abdomen, but with no apparent cause). After not being able to find the cause on a second CT and after other tests (colonoscopy, endoscopy, etc), they actually said - well, it's very likely a complication from your lyme disease. I was surprised myself!
Posts: 109 | Registered: Aug 2005
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posted
No, it was not Mass Gen (although this child did spend time there prior to be sent to Children's....
I just met with an ID doctor at MGH and was shocked and very pleased to find out how open-minded this doctor was regarding appreciating the flaws of diagnostic testing, durations of treatment and the potential for unknown infections the ticks are likely giving off.....I was so thrilled to learn this considering it is the same hospital that Steere is affiliated with.
As far as this little girl goes, there are no questions at this point that it is Lyme and/or another tick infection....problem is, it was determined probably too late.
It is a very, very tragic story. A doctor at one point even suggested that maybe this child was being sexually abused...(sigh)....
Posts: 561 | From mass | Registered: Jul 2007
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