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I had the IgG and the IgM western tests done. Both tests say that I am lyme negative, I guess that’s a good thing but then why do I feel so upset? I’m only 30 and was diagnosed with RA 2 years ago. Recently I’ve been having heart palpitations which were diagnosed as PVC’s. After doing some research, I thought that maybe the PVC’s and other symptoms were being caused by lyme but I guess now thats not the case? Anyway, here were my results. Any insight you could give would be greatly appreciated!
On the IgG: I was CDC and Igenex negative with a + to the right of the 41
On the IgM: I was CDC and Igenex negative with a IND (indeterminate) to the right of the 39 and a + to the right of the 41.Thank you in advance!
Amy
Amy,
Don’t feel bad for being upset that the Lyme test came back negative. It’s always reassuring to have something confirm why we are sick. A negative Lyme test does not rule out Lyme disease. There are still too many variables even though Igenex does have a good test. Lyme disease can suppress the immune system which will keep you from creating the antibodies necessary to test positive on the test. A good LLMD will treat you clinically based on symptoms not just the test. That treatment is then guided by how patient responds to the medications prescribed.
Hi there,
I went to a llmd this week and was dxd with lyme after using igenex as my lab. I was dxd with RA in 2009.
She told me some of her sickest patients don’t have a positive lyme test becasue you need your immune system to make an antibody and if it is supressed at the time of the test it does not make an antibody, and that is what the test picks up as a positive, the antibody.About the heart palps, I get those too. Have you looked at all the medication side effects you are taking? I have one medicine that has that as a side effect, as does cortisone shots. Lyme would be my first guess though.
What is your crp, sed rate and rf factor at this point? -if you don’t mind my asking. Are you taking prednisone or metheltrexate? These can supress your immune system as can lyme itself. Have you been checked for a mycoplasma infection?
One more thing,
I took 2 igenex tests, the first one a few months ago came back ind and igenex positive for igm western blot , but cdc negative. The second test I had done a few weeks ago came back positive for both igenex and cdc for western blot igm. I was feeling worse during the firts test and looked worse upon physical examination, my knees were very swollen. They are still a little swolen, but getting better.So my point is that sometimes you may need another test or make an appt. with a llmd if you can that can help guide you and you can have them help you through this.
Take care,
Sheri@RAinPA wrote:
I had the IgG and the IgM western tests done. Both tests say that I am lyme negative, I guess that’s a good thing but then why do I feel so upset? I’m only 30 and was diagnosed with RA 2 years ago. Recently I’ve been having heart palpitations which were diagnosed as PVC’s. After doing some research, I thought that maybe the PVC’s and other symptoms were being caused by lyme but I guess now thats not the case? Anyway, here were my results. Any insight you could give would be greatly appreciated!
On the IgG: I was CDC and Igenex negative with a + to the right of the 41
On the IgM: I was CDC and Igenex negative with a IND (indeterminate) to the right of the 39 and a + to the right of the 41.Thank you in advance!
Amy
Hi Amy,
There was another recent thread on IGeneX testing and a lot of the info there should also apply in your case, though your results present with fewer antibody bands.
Everything that Parisa and Sheri wrote above is right on! Some of the sickest folk don’t produce enough antibody and this is why, when symptoms are suggestive of Lyme and coinfections, folk will also have coinfection testing run (though it can also be iffy) and the CD25 test run. Here is an explanation of this test in layman’s terms:
http://www.publichealthalert.org/Articles/gingersavely/everything%20you%20always%20wanted.html
As you’ll note from the Brenner link on IGeneX western blot interpretation, Bands 41 and 39 are usually the first to show up. He explains further:
http://www.lymenet.de/labtests/brenner.htm
“The CDC criteria for a positive WB are as follows:
For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.
For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.
How were these recommendations arrived at? The IgG criteria were taken pretty much unchanged from a 1993 paper by Dressler, Whalen, Reinhardt and Steere [2]. In this study, the authors performed immunoblots on several dozen patients with well characterized Lyme disease and a strong antibody response and looked at the resulting blot patterns. By doing some fairly involved statistical analysis, they could determine which bands showed up most often and which best distinguished LD patients from control subjects who did not have LD. They found that by requiring 5 of the 10 bands listed, they could make the results the most specific, in their view, without sacrificing too much sensitivity. (“Sensitivity” means the ability of the test to detect patients who have the disease, “specificity” means the ability of the test to exclude those who don’t. Usually, an increase in one of these measures means a decrease in the other.) The IgM criteria were determined in much the same fashion (by different authors in different papers). Fewer bands are required here because the immune response is less mature at this point. Several studies have shown that:
1. the first band to show up on a Lyme disease patient’s IgM blot is usually the one at 41 kDa,
2. followed by the OspC band and/or the one at 39.
The OspC and 39 kDa band are highly specific for Bb, while the 41 kDa band isn’t. That’s why the 41 by itself isn’t considered adequate. Here’s the rub, though: the CDC doesn’t want the IgM criteria being used for any patient that has been sick for more than about six weeks. The thinking here is that by this time an IgG response should have kicked in and the IgM criteria, because they require fewer bands, are not appropriate for patients with later disease.”
So the significant antibody band in your result is Band 39. It’s significant, because it is one of the first expected to show up (statistically), but is also highly specific for Lyme. The fact that you got an “IND” reading (indeterminate) is really neither here nor there, because it means the test was picking up some of this antibody, even if only a little. It’s sort of like “you can’t be a little bit pregnant,” in this scenario.
As Sheri said, this and any blood test is only “one moment in time” and labs change day to day. In the case of Lyme testing, the bands will usually increase in number over time, but this isn’t always the case either….if one is getting sicker, then sometimes the immune system just can’t build enough resistance in the shape of antibodies to show up on a test. Lyme is known to be highly immune suppressive. A new study has just come out of UC Davis and has shown that Lyme aims straight for the lymph nodes, out of the blood stream. It also hides in tissues and has a veritable cloaking system, changing up its outer surface proteins to avoid immune surveillance (and thus antibiotic attack). That is, borrelia hijacks our macrophages – the immune cells that clean up infections – goes into them, intracellularly, then changes its outer coat to avoid detection. Tetracyclines are bacteriostatic….they work intracellulary to disable pathogens, but if the immune cells are harboring infections that are undetected, then how can abx work efficiently? They can’t – this is why multiple classes of abx are used for borrelia, including those that work to destroy pathogen cell walls (like penicillins, called bacteriocidals) and cyst-busting meds…to try to hit those resistant forms with reduced outer surface proteins that the immune system has trouble locating. Much of this is shared in the book by Pam Weintraub (called Cure Unknown – http://www.cureunknown.com), so if you can pick up a copy to read, it will give you a thorough Lyme 101. Here is the UC Davis Study:
http://www.lymedisease.org/news/lyme_disease_views/lymphnodes.html
Thank you ladies for your replies!
Sheri, I too was diagnosed in 2009 with RA, Dec 22 to be exact. The only meds I’m taking right now is 100mgs MWF of Minocycline and 2.5mgs daily of prednisone as well as ibprophen daily. As far as my bloodwork, I honestly could not tell you what my results are. The only test I remember him telling me about was my Rheumatoid factor which he said was 17 (that was December 2009), he said anything over 15 is considered RA? I haven’t had any tests done since last year. My rheummy that I was seeing refused to treat me with antibiotics and told me that unless I went back on the methotrexate and possibly a biologic, there was nothing he could do for me. My AP Dr has never requested any bloodwork other than having the CDC lyme test dome as well as my CBC, kidney, and liver functions which he said were all normal. I didn’t feel very comfortable with him honestly. I didn’t start having my heart palps until I did the clindy iv’s, during one of the doses is when I first started having them. I told him that I didn’t want anymore iv’s and he told me that without them, AP wouldn’t work for me.
Maz, as always, Thank you for all of your insight and information. At this time I think what I need to do is find an LLMD to work with me. I called one today but they do not take insurance and the first visit alone is $1200! With having two young kids in daycare right now, paying that much for 1 appt is not feasible. I will keep looking though.Thank you all again for your imput and advice. I really don’t know what I would do without this forum. I am so glad that I always have a place to go to for answers to questions and support!
RAinPA,
Just wanted to concur with what everyone else has said. I was also IGenex negative as well as babesia equivocal. I had no positives on band 31, yet Dr. Harris of IGenex recommended an additional 31 epitope test, and it confirmed exposure to lyme. Now, a year and a half later, I have greatly improved with treatment. A good LLMD will know how to treat you….
nancy
RAin PA,
I know what you mean about the cost of an appt for an llmd. I flew to CA to see one last week and I really can’t afford it, but I feel so crappy I mustered up enough energy to get myself there. My sweet sister met me there so I had someone to go to the appt with me. I have been expericing heart palps and they freak me out a bit too.
I hope you get to the bottom of this, I feel we are in the same boat in a sense, because we were dxd with RA around the same time. Anything I learn I will pass on your way. My llmd told me for herxing reactions to get the body more akaline and take alka seltzer gold, the kind you find at the drug store.
Hope you continue to improve,
SheriDear RAinPA,
My Lyme test results were equivocal too (mostly negative, one positive per IGenex, several “soft Lyme indicators” per my LLMD.) I did not have a bullseye rash, nor do I live in a Lyme state (GA). So, from the beginning, the doctors cried “RA!” and wanted me to take mtx and prednisone. Everytime I mentioned Lyme or AP, I was rebuked. There are no AP doctors OR LLMDs in GA. I’m not kidding. I called the ones listed with various organizations but each call was disappointing (no new patients or, most often, “no, the doctor had one patient one time who had lyme and she doesn’t really treat it”).
So I had to make a decision. I decided to fly to NY to see a doctor who knows about Lyme disease. I spent a lot of money on the first visit and I still spend a lot of money on phone consultations and blood tests and supplements. It takes all my money, really. It’s without a doubt well-spent. I am 3 months into abx and I can see glimpses of my old self. I’m so excited that I can hardly stop talking about it. Keep your hopes up, RAinPA. Do what you can to see a doctor who really knows about AP or about Lyme disease.
Hollyanna
Thanks Sheri for the tip on taking the alka seltzer. I really appreciate your sharing info from your LLMD. That was nice of your sister to go to your appt with you. I’m really glad that I have options here in PA and won’t have to fly anywhere. I am still looking for a LLMD here. I’ve been doing a search on the list that I received from Maz and am going to call a few tomorrow to get more information.
Hollyanna, I’m really glad that your starting to feel better. I’m really looking forward to finding a Dr so that I can start treatment and get back to my old self too.
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