A brief introduction: I was tested at IgeneX for Lyme back in 2004 due to "mysterious" health problems I had been having about five years prior. My symptoms didn't really fit the picture, but I was trying to rule things out. My results were:
PCR: negative (genomic), positive (plasmid) B burgdorferi IgG: negative IgM: positive - equivocal on 23-25, positive on 39 (one plus sign), positive on 41 (one plus sign)
At the time, my family doc was skeptical. I remember him saying something to the effect of "If you look for something hard enough, you'll find it." Because my symptoms were mostly gastrointestinal, and I had no memory of a tick bite, and didn't have many classic Lyme symptoms, I moved on.
Eventually I was diagnosed (confirmed via two different colonoscopies) with Crohn's disease. This fit my symptom picture pretty well, and so I forgot about Lyme and just focused on that for several years.
Fast forward to February of this year. I was walking my dog in a known endemic area and was bitten by an adult deer tick. I went to the doctor to have it removed, probably about 36 hours after the bite. The tick was sent to the county health department but they weren't able to determine if it was a carrier.
I did not have any flu-like symptoms after the bite, but over the next several weeks my "normal" symptoms worsened and intensified. Some of them, like muscle pain and "restless leg" at night, got worse. But these are things I have experienced before to one degree or another.
I began to suspect Lyme might be a possibility again, so after doing some reading I had a CD57 test. It came back at 38.
My understanding is that the clinical value of CD57 for predicting outcomes is controversial. Some Lyme patients who are very sick have high CD57, and some who are well have low CD57. But here's my question: is the CD57 diagnostic for Lyme? From what I've read, the only other thing that can lower CD57 is HIV. Is this true? Or is it possible that something else can do it?
I have an appointment with an LLMD in August. But before that I want to learn as much as I can about what might constitute a definitive diagnosis in my case. The question is, was it Lyme all along that was causing my health problems (misdiagnosed as Crohn's)? Or is this simply Crohn's disease that happened to get worse around the time I recently got bitten by a tick?
Obviously I don't want to start an expensive and intense treatment for a disease I'm not even sure I have.
Thanks for your help.
Posts: 7 | From Oakland, CA | Registered: Jul 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Well I have lyme & co and most of my initial issues were GI. Not Crohns, but GERD and Gallbladder.
Now that I've started treatment they are much better.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Yes, you have Lyme & probably coinfections.
Band 39 is Lyme specific-your family doctor is poorly informed, seems to be common regarding Lyme and TBD (tick borne disease).
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey switters,
Have you posted here before under another name? If so, you don't need to register each time to ask questions.
posted
Tincup: no, this was my first post here. Why?
Janet: thanks for your response, and for the link. I'm kind of in shock after reading it. From what I understood after reading it, my 2004 was positive by even the conservative CDC criteria. Here are my full results:
Right there on the IgeneX report it says: CDC/ASTPHLD surveillance criteria and New York State interpretation: an IgM WB is positive if 2 of the following bands are present: 23-25, 39, 41.
So, unless I'm misunderstanding something, this was a positive result even by the conservative CDC criteria?
How in the world did my doctor miss this? How did I miss it? It's written right above the results. I don't think either of us would have been skeptical of a CDC positive result had we understood that's what it was (if indeed it was).
I have an appt. with an LLMD on August 24th. I guess that's the next step.
Posts: 7 | From Oakland, CA | Registered: Jul 2010
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
You've got a lot of reading to do before 8/24. Put your faith in yourself.
You can assume you've got coinfections. Testing is expensive and unreliable.
IMO, Babesia needs to be treated first or you're just spinning your wheels.
We're all here to help you.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Am I correct in assuming that these results are positive even by CDC criteria?
Posts: 7 | From Oakland, CA | Registered: Jul 2010
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I'm not sure about your results .... what does +/- mean? Are you posting the results for both your IgM and IgG together? Can you separate them? It's hard to tell what's what with the current format.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Those are all IgM. The "+" and "-" are what IgeneX uses to indicate whether that specific band is positive or negative. "+/-" means equivocal, "+" means low intensity, "++" means medium intensity, and "+++" means high intensity.
The IgG was ruled negative by IgeneX so I didn't include those results.
As I said in the original post, I also had a positive PCR plasmid for BB in that same test (the genomic PCR was negative).
Posts: 7 | From Oakland, CA | Registered: Jul 2010
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posted
Okay, that helps, thanks! That does appear to be a lot of positives for an Igm!!
I'm glad you're scheduled to see an LLMD.
I had Crohn's symptoms as part of my Lyme symptoms. I had terrible parasites and bacterial overgrowth in my intestines. I was in such bad shape that little food was digesting and I had to eat an almost all liquid diet.
Now that I'm finished with Lyme treatment, my gut is coming back. I'm working on building the good bacteria still with lots of fermented food. I can eat normally again, but have a little trouble with raw veggies. I take HCL to help with digestion.
So, GI issues can be caused by Lyme and all the other issues Lyme brings with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Borrelia burgdorferi is Bb not BB.
Yes, your western Blot is CDC positive.
Please read the Burrascano information.
Do you trust your family doctor?
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
I haven't seen a family doctor in a long time. I'll go to see her after I see the LLMD to figure out how much (if at all) she'll be willing to help. I'm not counting on anything from her.
I've read the Burrascano info - thanks. I've also read Buhner's book, Cure Unknown, Insights Into Lyme Disease Treatment, and a lot of online articles. Clearly I have a lot to learn. This is such a huge subject.
I'm an acupuncturist and herbalist myself, so I lean towards using Buhner's protocol in addition to the antibiotics. I have a lot of training in functional and nutritional medicine that I imagine will be helpful along the way.
sixgoofykids, interesting that you mention parasites. I have tested positive for Blastocystis hominis a couple of times over the years. In fact, I thought that was the source of my problems for quite a while. It is probably still contributing it, but now I'm beginning to understand that the reason I haven't been able to get rid of it is probably Lyme.
Posts: 7 | From Oakland, CA | Registered: Jul 2010
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posted
I'm really blown away right now. It's going to take me a while to get over the fact that I had a CDC positive result and my doctor dismissed it as insignificant. That's more than six years of unnecessary suffering and wasted time.
I think my doctor really didn't trust IgeneX, and that's why he dismissed the result. I remember something about him calling IgeneX and asking them what percentage of test results are positive for Lyme and what percentage are negative. When they wouldn't tell him, he became suspicious - and that's when he said "If you look for something hard enough, you usually find it."
He was an amazing doctor in so many ways - very caring, holistically oriented and he helped me a lot. But he really missed the boat on this one, and so did I.
The past is the past, though. I need to focus on how to get well.
Posts: 7 | From Oakland, CA | Registered: Jul 2010
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Switters, my parasite tests came out negative. I did test positive for klebsiella and citrobacter, so started herbs, and was surprised by seeing a huge tapeworm. I was taking Humaworm.
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