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Hi,
I recently got the results back from an IgM from Igenex, which show 4 Lyme bands positive, 18, 39, (41), and 93. Even the CDC calls this positive, but my question is this; Does anyone have any information on the percentage of false positive results through Igenex? I know that you can't call any test totally conclusive, but it would be nice to know what their rate of accuracy is to kind of help tip the scale in making the decision to go on treatment.

I've had mostly neurological and heart symptoms for over a year, and the multitudes of doctors I've seen can't come up with anything else, although they are almost all suspicious of the Lyme finding, and some have come right out and said, essentially, if you want to be found positive for Lyme, go to Igenex. (I have already seen Dr. H associated with the lab and he wants to start treatment.)

So confusing and difficult especially since I am nursing a son who will need to be tested/treated!!!
Any thoughts would be appreciated.
Hi mominca.

It is true, no Lyme test is completely reliable. It seems to me that there are false negatives, not false positives. You have symptoms and nothing else has been found. You have been diagnosed by an excellent doctor. I am sure he would not diagnose you if he did not believe you have Lyme. Did he test you for the co-infections?

Regarding your son, I highly recommend that you contact Dr. Charles Ray Jones in New Haven, CT. He is the best Lyme pediatrician in the country. I am sure his office can give you some important and valuable advice. He has helped so many children.
It may be true that there is no 100% accurate test, but if you're having those kind of symptoms AND you have a positive from Igenex, it's sort of a no-brainer.

You certainly can have a false negative from Igenex, because many people have. In one instance, the woman in question had a negative from Igenex, and then later the actual Bb spirochete (the Lyme organism) was found in her tissues. I have never heard of a false positive from Igenx. If they do have a higher rate of positives, it could very well be because other labs miss so many cases. Because of this, many people have had to wait years to get treated, causing worsening of their symptoms.

Why some doctors are so fearful of the Lyme diagnosis, I have no idea. It could be that since treatment is expensive, insurance companies don't want to pay and pressure physicians to keep the number of cases down.
Hi Monminca- If I were you I would start treatment on orals and just test the waters. That is when the proof is in the pudding. For me I tested positive for lyme, babesia and ehrlichia as you have probably seen me post a million times...I had such a hard time believeing it because of all the conventional docs and John's Hopkins Negative tests.

Started treatment - started getting better - I sure don't doubt it now.

I trust IgeneX more than I trust any lab out there and as for the doctor who said if you want a positive test go there - he/she needs to get his/her head out of the sand or any other dark place he/she may have it.

Sorry I am a little upset today...

I hope you find some relief soon! ;)
Thanks all for your input, and to ncgirl88 for your very helpful suggestion!

I really needed some opinions about what to do from people who have been there before, because there is not a lot of awareness about Lyme where I live (so.cal) and therefore a lot of skepticism. I think we are so accustomed to putting a lot of trust and faith in conventional docs (and why shouldn't we?) that it is hard to discount what they have to say. Even smart, well-meaning doctors can be uninformed about Lyme.

But I have a further question, which is part of why it is a little complicated for me to just start on the amoxycillin. I am currently breastfeeding my son, and I assume I have to get him tested because Lyme can pass through breast milk. Does anyone know if you can just get your breast milk tested to spare the little guy the ordeal of getting a blood draw (meaning, if for some reason, it's in my system but not in my milk?) and, if I do need to get him tested, do I need to do it before I start taking the amoxycillin (and therefore he'll be getting it too)??--this may be a bit of a side subject for this thread, but....

Thanks again for all the much needed help.
mominca - If I were you I would call Dr. Charles Jone's office is New Haven, CT. They may even answer your question over the telephone. He is the only pediatric lyme doctor in the world I believe. Laurieblah's son here on Healthboards has seen him.

This is an extremely important question and one that you need a definitive answer to since so much is at risk...your son's future health.

I am sorry I cannot post more contact info. here re: Dr. Jones but you should be able to find him on the net.

Good luck and lets pray that you will find the answers soon.

Take care,
ncgirl





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