ELISA question

[nicklemama]

I'm here from the PANDAS boards. I took DS to see a new doc yesterday to help us w/ local treatment. We've had two IVIG's w/ Dr K with good results, just not lasting results.

 

To get to the point, almost 2.5yrs ago, when he was finally diagnosed, he had a ton of labs ran by Dr T. A W Blot was ordered but here in MI, an ELISA must be ran first and then IF its positive, the W Blot is ran.

 

DS's ELISA came back 0.41. The range for negative is listed as 0 to less than 1.00, equivocal is 1.00-1.20. 1.20+ is positive.

 

So, the test says negative. The new doctor told me this is not a negative ELISA and that the 0.41 is reacting to something and that a truly negative ELISA would be 0.

 

She is not an LLMD. She's helping me locally w/ PANDAS. She has been following Dr T and ordering his tests recently. I guess my question is.....Is she right? Is this really not a negative ELISA?

 

She's ordered a W Blot and all the coinfections from Quest to start since my insurance covers it. I will pony up for Igenex if anything comes back suspicious. What do you all think? DS has never tested positive for strep or mycoplasma. We are running a ton of virus titers and new mycoP and strep titers to try and get to the bottom of things. We are running so many tests, we have had to divide them up into two since my son is 9 and 65lbs. First blood draw was this morning. I have wait at least a week for the second. I'd appreciate any and all input.

[Hopeny]

Hi, in the Lyme world the ELISA test in considered irrelevant. I would highly recommend a book called Cure Unknown by Pamela Weintraub which will help you understand in more depth about the testing, how it was developed by "doctors" (i use the term lightly) with conflicts of interest, and how Lyme can go undiagnosed for years. There is also good information on ILADS.org. A western blot is necessary to determine exposure to Bb (lyme). A Lyme Literate Doctor uses the western blot, combined with clinical symptoms, to make a diagnosis. Sometimes a + diagnosis of Lyme can be made solely on clinical symptoms. Quest tests only for a few strains of Bb, Igenex tests for hundred. I would definitely recommend Igenex even though it may be a bit pricey. The following WB bands are considered relevant or indicative of exposure and/or active infection, if they come up Indterminate or positive, bands 18, 23, 30, 31, 34, 39, 83 and 93. Other bands that the CDC consideres relevant, such as 28, cross react and do not provide useful information on Bb exposure. There is a new blood culture test from advanced labs that is supposed to identify BB spirochetes in the blood. It runs around $500 and you must be off abx for 4 weeks prior. Igenex has some other culture tests that may be helpful. More devestating than Bb sometimes are the Lyme co infections, which can be tested through Igenex as well or to save some money you could give Quest a shot. Lyme is extremely complex and frustrating to deal with, I am happy to speak with you by phone if it would be helpful. Just PM me and I will send you my number. My DD9 has chronic Lyme and my 3 yo has an active infection from the summer. We are also dealing with PANDAS. No disrespect to Dr T, but he is a neurologist and would not be my choice for Lyme.

Lyme is awful but if you find this is the problem you are on your way to recovery.

[KaraM]

Ditto on Hopeny's reply.

 

Here is an article which I think is helpful as well:

 

http://naturalnutmeg.com/?p=1000

 

Kara

[nicklemama]

Thanks for the info. I have read Cure Unknown. It's hard for me to think he has Lyme. He's never had a known tick bite and we do not live in a Lyme endemic area. But our state is an emerging area. Actually, if anyone has Lyme in our house, it would be me. I'm getting tested after I get back DS results. I have RA but after 15 yrs, still have no joint damage. I have always been seronegative for RA. Changed doc yr ago. He's not convinced I have RA. I am currently on the minocycline protocol for RA. New doc discovered I have fibromyalgia. I am exhausted all the time. I thought it was from caring for PANS DS. I'm starting to believe that's not the case. I'm just trying to figure out why the ELISA would be considered positive. Blood was drawn yesterday on DS by Quest. Have to start there. Still recovering from paying for IVIG #2.

[sf_mom]

I was also originally thought to have Fibromyalgia. Treatment has not been easy but I am over 2 years into Lyme treatment and I do see a light at the end of then tunnel. All the pain even in my lower back is gone. All the headaches, urinary issues, moodiness due to tiredness, hair loss is gone. I have some brain fog 'forgetfulness' that is greatly improved and random fatigue. Some days I have no symptoms and that feels awesome. When they really tested me I was loaded up with multiple issues: EBV, HHV6, Mycoplasma, Lyme, Bartonella, Babesia, Vitamin/Mineral deficiencies, etc. I am so grateful to our treating Dr.'s as we are getting our lives back as a family.

 

Two of our children when tested even via Igenex were serologically negative due to the fact they got Lyme while in-utero and their bodies didn't/don't recognized the bacteria as foreign. We finally found lyme when we looked for DNA in their urine. One child did make antibodies and was IND for Lyme, positive Babesia, positive Bartonella. We also had no known tick bites and we lived in downtown San Francisco prior to diagnoses, etc. Two of the kids were sick fairly early on in life and on regular antibiotics at 2 1/2 years of age. Older son's immune system failed at 5 1/2 years of age after vaccinations, strep related illness and exposure to a child with full body rash all within 3 weeks. He was treated by Dr. K for PANDAS one year and had 3 hdIVIGs during that period. He responded well to treatments but could not achieve full recovery. We were forced to look at other issues when he had blood in his stool for over 7 weeks and that is when we found Lyme. "Today" he has no obvious symptoms of Lyme or PANS. However, we are starting heavy metals chelation and expect that to change. Both my husband and I had tons of exposure as kids. I am from MN and spent summers camping and sailing on MN/Canadian border. DH is from North East and remembers pulling a ton of ticks off himself while growing up.

 

I would also recommend renting or buying Under Our Skin. Definitely test yourself no matter your son's results. A good friend's son who also has Lyme/PANS and had 3 hdIVIGs could not sustain recovery and would typically regress between weeks 8 to 14 and why she was forced to look at other issues as well.

[Hopeny]

nickelmama if funds are really tight now then see what Quest says and maybe your doc can treat with a combo abx. Fortunately my DD tested CDC + on quest with bands 23 and 41, but many do not. If you have someone willing to work with you and there is no other option, Burrascano published guidelines can be helpful. I understand if your doc calls ILADS they will work with them on a protocol. Lymeaid4kids offers some funding to help defer the cost of LLMD visit. The ELISA IMO is a waste of insurance company money and co-pays. From what I understand many Fibromyalgia dx's and arthritis are actually Lyme. My own theory (unscientific) is that kids with chronic Lyme issues had some type of exposure in utero. I suspect doing a lookback that I had Lyme and likely Bart contracted at sleep away, I had many symptoms of it. My theory is somehow this made my kids more vulnerable. combined with an immune problem they have, we find ourselves where we are today. Deer are not the only vector for infected ticks. They are carried by mice, birds, geese etc and they have found Bb in mosquitos although it is not clear if the bite is long enough to infect a human. They live in wood piles, trees, grass and leaves. My older DD never had a known bite or bullseye, although she did present with what I now know are classic Lyme symptoms. Younger DD had something i thought was a mosquito bite, fortunately for us a bullseye was kind enough to appear 30 days after - never saw a tick even with my hyper villegence and it was on her forearm. DD spent time near our library watching the geese, I suspect this is where she got it. We live 30 minutes outside of NYC in the suburbs. I know almost no one local whose kids have Lyme, actually only one other mother and her kids were infected in Maine at sleep away camp. I hope you are able to find the answers that you need.

[nicklemama]

Thanks everyone. I will get tested. It's a matter of time. Like most moms here, my priority is my son. He goes back on Fri for round two of blood draws. His doc here has listened to all Dr T's radio programs and has spoken to him on the phone, so she is now running all dr T's tests and that is a lot of blood, so it's done in two draws. If either of us turn up positive, we will go to an llmd and have local doc for help. I think I'm the more likely one. I grew up in OK and while that is not a known hot bed of Lyme, I've pulled many, many ticks off over the course of my life.

 

I should add, DS was adopted, so if he has congenital Lyme, it did not come from me. He was born in St Petersburg, Russia in a very urban setting.

[tpotter]

PM'd you.