One last IGENEX question

[matis_mom]

So I got into this long conversation with dh about what tests to do and not to do and how to proceed with DS, as he is not doing well lately. His question was, "If you do the IGENEX and it comes back negative, will you be at peace that he does NOT have Lyme?"

 

Can anyone answer this for me? I know ds has something in the background preventing him from being 100% well, and I don't know what it is. The possibilities are endless, but our financial resources are not, and I need to be prudent as to what tests to do.

 

Thanks so much!

 

Isabel

[justinekno]

My dh asked me the same question before we sent off our IGenex kit! We were fortunate that my son's test came back positive (that wording just sounds weird in this context) because we didn't have to explore what to do if it's negative. From what I have heard, it is very possible to have a negative Igenex test and still have Lyme. Because my son has had Lyme for so long (possibly born with it) I think the few months of antibiotics helped him to have the positive response. So ironically it was probably good that we went the PANDAS route first, had the antibiotics, and then tested for Lyme. I'm sure more experienced Lyme people will chime in about the false negative result.

 

So I got into this long conversation with dh about what tests to do and not to do and how to proceed with DS, as he is not doing well lately. His question was, "If you do the IGENEX and it comes back negative, will you be at peace that he does NOT have Lyme?"

 

Can anyone answer this for me? I know ds has something in the background preventing him from being 100% well, and I don't know what it is. The possibilities are endless, but our financial resources are not, and I need to be prudent as to what tests to do.

 

Thanks so much!

 

Isabel

[lyme_mom]

So I got into this long conversation with dh about what tests to do and not to do and how to proceed with DS, as he is not doing well lately. His question was, "If you do the IGENEX and it comes back negative, will you be at peace that he does NOT have Lyme?"

 

Can anyone answer this for me? I know ds has something in the background preventing him from being 100% well, and I don't know what it is. The possibilities are endless, but our financial resources are not, and I need to be prudent as to what tests to do.

 

Thanks so much!

 

Isabel

The only way to be sure is to have an ilads doctor evaluate him and to even do a trial treatment. If it is possible that your son has lyme it could be the missing link. You can skip the igenex test and go right to an ilads doctor too. Tell him you don't want to do expensive testing and see what he or she says. The full lyme panel is supposed to be the most reliable test for lyme (it costs 3 o 400 dollars). The igm and igg lyme panels (200) are much more reliable than the ones covered by insurance but even those tests can be wrong. Some people do not make antibodies to lyme so antibody testing doesn't work. Dr. Jones told me that none of the tests for lyme are totally reliable. Its a clinical diagnosis in the end and a trial treatment would tell you if it works pretty soon. What are his symptoms?

[matis_mom]

So I got into this long conversation with dh about what tests to do and not to do and how to proceed with DS, as he is not doing well lately. His question was, "If you do the IGENEX and it comes back negative, will you be at peace that he does NOT have Lyme?"

 

Can anyone answer this for me? I know ds has something in the background preventing him from being 100% well, and I don't know what it is. The possibilities are endless, but our financial resources are not, and I need to be prudent as to what tests to do.

 

Thanks so much!

 

Isabel

The only way to be sure is to have an ilads doctor evaluate him and to even do a trial treatment. If it is possible that your son has lyme it could be the missing link. You can skip the igenex test and go right to an ilads doctor too. Tell him you don't want to do expensive testing and see what he or she says. The full lyme panel is supposed to be the most reliable test for lyme (it costs 3 o 400 dollars). The igm and igg lyme panels (200) are much more reliable than the ones covered by insurance but even those tests can be wrong. Some people do not make antibodies to lyme so antibody testing doesn't work. Dr. Jones told me that none of the tests for lyme are totally reliable. Its a clinical diagnosis in the end and a trial treatment would tell you if it works pretty soon. What are his symptoms?

His symptoms are anxiety, OCD, frequent and long bathroom trips, fatigue, headaches, joint pains, difficulty concentrating, etc. He does well with steroid tapers, but looses ground when exposed to strep. After the first steroid burst he was 99% back to normal. So on one hand, he does well with the standard PANDAS protocol, but on the other, he cannot keep his gains. I would think if it was Lyme, the joint pains and fatigue would be more constant, but they really only creep back up along with the other, more PANDAS like symptoms... It looks like we will need to go see Dr. Beals!

Edited August 25, 2010 by mati's mom

[Vinny123]

Quote from a friend:

 

IgM Western Blot was all negative with the following exceptions:

23-25 IND

31 IND

39 IND

41++

 

Omnicef omni-pac for a month and then I go back to see him. He is very nice and asked if I have any questions but I still don't understand enough to know what the heck to ask!! He said that I was about as close to a positive result as one person could be and still fall short.

Edited August 25, 2010 by Vinny123

[LNN]

 

His symptoms are anxiety, OCD, frequent and long bathroom trips, fatigue, headaches, joint pains, difficulty concentrating, etc. He does well with steroid tapers, but looses ground when exposed to strep. After the first steroid burst he was 99% back to normal. So on one hand, he does well with the standard PANDAS protocol, but on the other, he cannot keep his gains. I would think if it was Lyme, the joint pains and fatigue would be more constant, but they really only creep back up along with the other, more PANDAS like symptoms... It looks like we will need to go see Dr. Beals!

 

Sounds a lot like my son, except for the fatigue. Huge brain fog. But has done really well with month-long prednisone tapers - halts everything. But can't sustain remission for longer than 2.5 months. We did the Igenex test last week (no results yet). At the same time, we did a C3d immune complex test, as I'd read on the forum that high complexes can give you a false negative (but Igenex would not confirm - told me to ask my doctor) Well, got his C3d levels yesterday - 52 (anything above 8 is high). They were 51 in March. I thought after Ivig this would have/should have dropped significantly. Wondering if the IVIG had any impact on his system or if something else is getting in the way.

 

So in my case, the answer to your husband's question is "no" - I'm not going to be sure I can trust the results if they're negative. I will only trust them if they're positive or indeterminate. Like you, I've questioned a Lyme dx because of his awesome response to 4 weeks of prednisone and we don't have a 4 week cycle of behaviors. But something is going on. I will look for that needle in a haystack with you - we should stay in touch.

Laura

[MichaelTampa]

Quote from a friend:

 

IgM Western Blot was all negative with the following exceptions:

23-25 IND

31 IND

39 IND

41++

 

Omnicef omni-pac for a month and then I go back to see him. He is very nice and asked if I have any questions but I still don't understand enough to know what the heck to ask!! He said that I was about as close to a positive result as one person could be and still fall short.

 

 

I think many experienced lyme doctors would consider that pretty positive for lyme, if clinical symptoms looked like lyme. All I had was 39IND and 41+ and lyme treatment was very helpful for me.

[lyme_mom]

Quote from a friend:

 

IgM Western Blot was all negative with the following exceptions:

23-25 IND

31 IND

39 IND

41++

 

Omnicef omni-pac for a month and then I go back to see him. He is very nice and asked if I have any questions but I still don't understand enough to know what the heck to ask!! He said that I was about as close to a positive result as one person could be and still fall short.

 

 

I think many experienced lyme doctors would consider that pretty positive for lyme, if clinical symptoms looked like lyme. All I had was 39IND and 41+ and lyme treatment was very helpful for me.

I agree. My first lyme test was igenex negative but I had indeterminate bands for 31 and maybe one other. We did the band 31 confirmation test (a follow up to the western blot through igenex) and it came back positive. I later was tested using the lyme dot blot urine test and was positive. Two of my kids were also very borderline so I believe where there is smoke there is fire. Indeterminate bands mean something was there, it just wasn't strong. Think of a thin sharpie vs a thick one on the test printout. That's not something to relax about. Also, the four week cycle is not always the case so I would not put too much emphasis on that. I never noticed a particular pattern to our family's symptoms but we all got better with the treatment. As for the steroids not causing an immediate downturn in the patient, a patient can respond to the steroids in the short term but still be sick with lyme and/or get much sicker later.