Is there lyme?

[kimballot]

Hello - I just finished posting on the PANDAS page and I thought I'd copy things over here in case anyone has any discussion about lyme testing. I am copying some of my posts over the last 2 days. You may have read them already on the PANDAS page. I am open to any ideas folks may have -

Here are the posts:

 

 

hey kimballot-

Yes, it was actually Dr. Harris @ Igenex I spoke to. I had called him to talk about my dd's results, with the "negative" but the statement that "presence of even one + or IND on any ** band might be of clinical significance"....he was the one who said to have my Dr. fax the order for the Epitope 31 confirmation test. I believe he said it's #489. When I called Igenex to see if they had run it yet (I don't wait for Dr.'s to get back to me...), they said they were only running the #488. So, I again spoke with Dr. Harris, who explained that sometimes 30 is really 31, and that if indeed that were the case, then her results would be positive. Didn't really make sense to me since she was 31+. Nonetheless, he said that 31 cross-reacts (which is why I still don't quite understand why in the world band 31 is considered SPECIFIC for LYME???). He called me directly the next day and told me that it was negative. Therefore, 31 was NEGATIVE FOR LYME....still would be + on the WEstern Blot, but + because it was a cross-reaction to a bacteria or virus. So I believe the epitope test is "specific" for lyme. Wonder why they can't do that on all the bands???

 

I think this is critical to know, and I wonder how many other bands that are + are just cross-reactions. Pretty sure 58 and 66 are like that, as well as 41, as I've seen soooo many post with those bands positive. I wonder sometimes with the Igenex being touted as being "more sensitive testing" that maybe it's picking up too many cross-reactions. I just don't know. The thing is this: Lyme is not "caught" like a virus or bacteria. There has to be a tick bite, and the tick has to be on long enough to transmit the bacteria. I know we live in a very, very ticky area---my kids get too many ticks to count each spring and summer, and I can't even tell you how many of those little deer tick buggers I know I missed.

 

Also, even with dd's results, Dr. Harris said he could not say that it was indicating LYme, and more or less indicated to let it go. Her results were:

 

CD57 243

 

Titer 1:40 IND

 

IgG

30+

34 IND

41 ++

58 +

 

IgM

31 ++ (which was really a -)

41 IND

58 +

66 +

83-93 IND

 

Of course, I still haven't let it go;) Just trying to figure out next step...finding a reasonable LLMD who won't force us into Lyme, but will only rule it out if it should be....

 

 

 

 

actually, they will ONLY use the blood they used to run the original western blot, which they keep for 3 months. But, yes, it is still another $100

 

 

 

Now,if band 31 is specific for BB....why does IGENEX run a band 31 confirmation test? After which....this "Lyme specific" band 31 becomes not so specific? I wonder how many other "specific" Lyme bands are like this?

 

Pmom- what is a "lyme specific confirmation test"? Is that part of the original igenex testing, or is it something that is ordered separately? My son tested ind on band 31 IGg and I do not se a "band 31 confirmation test" in his report. Should I?

 

 

 

Well, when you get your IGENEX test back for Lyme.....you expect them to be as accurate as possible, right? well, apparantely not. If you are band 31 positive or IND....you then can choose to get another blood draw, pay more money, and send it in to see if your initial positive specific band 31 on your IGENEX is truely a positive for Lyme. You'd think you could expect that in the first place with the first bucks/blood you send in. So, yes, there is a "band 31 epitope" confirmation test that IGENEX now newly offers. So, if you want to know if the IND is positive or negative.....you can order the test.

 

EljoMom - let me get this straight... If my son is ind on IGG 31 and 34... I can find out if the ind is really positive or negative for $100 more dollars? It seems crazy to spend more money, but if it will give me a more definite answer, it is much better than finding an llmd, traveling to the llmd, and questioning myself before proceeding with IVIG.

 

 

 

 

I'm glad you were able to get in touch with him and get some guidance. Can you tell me what PCR is? Also what your sons' results were again?

 

 

Please keep us posted if you call kimballot. Dr. Harris is only there on Mondays and Tuesdays. Just call and ask to talk to him. If he's available they will put him right on. If not, you can leave him a message. He has always called back. I am guessing he will run the 31 epitope on your IND on 31 IgG. Let us know what he says....

 

EljoMom - I cannot thank you enough!! I just got off the phone with Dr. Harris. First off - what a very nice man he was. He listened to my story and looked over my son's tests. It is too late for me to get a confirmatory test anyways - blood was drawn 4 months ago and they only hold it for 3 months... BUT he said there was nothing in the tests that jumped out at him as lyme and that the immune treatments sounded like a greater priority than looking further for lyme at this time. He also suggested we consider PCR urine testing. Apparently, since my son has been on antibiotics for a while, we can do the urine tests and these are about 90% accurate. I plan to call tomorrow to order the kit and then talk with Dr. B about it at our next appointment. Since we had 3 ind bands, this is probably better anyway because the confirmatory test would only tell us about band 31 (from what I understand)

 

I have been so torn about this because I really think my son needs IVIG but I do not want to ignore lyme if it is there, and there are no lyme doctors in my area to consult with.

I think I had the answer to a prayer with this phone call and maybe I can sleep tonight and not check this forum every 5 minutes to see if someone has posted something that will help me make a decision! (sorry if I've been driving anyone crazy).

 

Thanks again!!

 

Hi EljoMom - I am trying to figure out the PCR test myself. I found this information on testing ( http://www.nhlyme.org/info/docs/WHATYOUSHOULDKNOW-IGENEX.pdf ) and it says:

 

The PCR (Polymerase Chain Reaction) test detects the presence of the DNA of the Lyme bacteria. PCR tests have more sensitivity early in the disease before patients have received antibiotics. The best specimen to test has not been defined. The test is usually performed on whole blood, serum, urine, CSF, or miscellaneous fluids/tissues.

 

This is a little unclear to me because Dr. Harris specifically said that my son needed to be on antibiotics to do the test. I think I am going to move this discussion over to the lyme board at this point as it seems that my questions are more lyme specific. I am looking forward to discussing this with Dr. B.

 

Regarding my son's results, he was IGG positive for band 41 only. He was IND for IGG bands 31 & 34 and he was IND for IGM bands 41 and 83.

 

He also has mild immune deficiencies for IGG, with 10/14 strep pneumoniae titers below protective leves, and his IGA is now mildly deficient (new finding in last 6 months). I also asked Dr. Harris if lyme could cause immune deficiency and he said he has never seen that and there was no reason to believe that the changes in my son's immune status was due to lyme.

 

I hope that helps! I am going to copy this last chunk of information and put it on the lyme board to see if others have thoughts on this. Thanks again for your help!

[sf_mom]

Can you clear your in box. I'd like to help privately if I can, thanks.

 

-Wendy

[KeithandElizabeth]

I really wish we had further explored the concept of chronic infections in more depth before we did all of the IVIG's on our son.

 

I do think that lyme and mycoplasma are extremely sneaky bacteria, both lacking a cell wall, and need to be fully eradicated. And the treatment plan for these bacterias is often a combo of multiple antibiotics, which is less invasive than IVIG and/or PEX. So, my advice would be to see an LLMD for a consultation about the possibility of your son having a chronic infection.

 

Today, a friend and I discussed the forum debate with our lyme doctor and he brought up the topic of MS and how MS is thought to be this autoimmune disease, but once several of his and other MD's MS patients are treated for their chronic infections, their lesions on their MRI's go away. So, he theorized that the lesions were actually from all of the inflammation..

 

Now that I am finding out that our children had multiple infections and now that we are treating each infection and seeing wonderful progress, I would advice to try this road for a little while. You can always go back to IVIG.

 

I would find a really good lyme literate doctor and please note that there are other great labs that can help with lyme, mycoplasma and coinfection testing. Most good doctors combine all of the labs anyway and pick and choose different labs for different infections.

 

Just my two cents.

 

Elizabeth