Is there a test to check for late stage Lyme Disease?

[Rachel]

I have went back and looked at many post on Lyme disease. So maybe I missed something and you guys can help me out. I went back and looked at all of my son's test results since he was sick in December 2010. He has been checked several times for Lyme and coinfections at different labs. After his main illness began, he was tested at 2 months, 6 months, and 9 months later for lyme and coinfections. All testing was negative and was done by different labs. I know that Lyme testing is not the most accurate from any lab even from Ignex. Is there a Lab that runs an accurate test to check for late stage lyme? I'm talking 4-5 years late. Or is this an impossible test to find?

 

 

 

 

[SSS]

Rachel, which Lyme tests do you have copies of?

Igenex Labs is considered the best,

and what to look for are which bands are positive (marked by *)

and which bands are IND (which means detected)

I believe a Igenex Western Blot test is $200.

 

I am not talking about co- infections here, just the Lyme.

[nicklemama]

Igenex testing will pick up late stage lyme. It did for me and for my son. I've never had anything but the Igenex. Quest testing on my son was completely negative with only band 45 positive. He had 5 bands on Igenex, three of which were lyme specific. Igenex tests for two of the Borrelia burgdorferi variants (as best I can describe it) and the mainstream labs only test for one.

[ktdommer]

I was CDC positive for Lyme, a rare thing to get, through Igenex with a 30 year old infection. My one son was Igenix positive with a 15 year old infection. Other son lit up in a few areas and was clinically diagnosed. We did no abx challenges. My husband only had a few bands IND but on the Borrelia specific bands.

[WorriedDADNMOM]

kt, care to share what ILADS doc you went to?? We have an appt for 8/22 for a relative? PM me as we also are in Ohio.

 

Any suggestions on what to ask, say, communicate to the doc about Lyme???

[mama2alex]

Who interpreted the results? A Lyme doctor will look at symptoms in combination with any positive (or even IND) bands and make a clinical diagnosis. Did you ever run an Igenex test? If so, you might want to post the specific results by band and get feedback here, because certain bands are more meaningful than others and just because the report says "negative" doesn't mean it doesn't contain hints that Lyme is probably an issue.

Some people with Lyme just don't show any positive bands on antibody testing, even Igenex. That was the case for us. After years of occasionally rechecking for Lyme, and never getting a positive result, we finally did the Advanced Labs culture in spring/summer 2013. At that point, we believe I'd been infected for 18 years and my son for 13 (all his life). It's not species specific, but if he has the symptoms (PANS) and nothing is showing up on antibody testing, it can either be comforting to see that there aren't any spirochetes in the blood or enlightening to see that there are. I think doctors are starting to discover that its not just Burgdorfori that can make you sick, even if the CDC won't yet acknowledge it. He would need to be off abx for at least 8 weeks prior though - not sure if that's an option.

[trintiybella]

mama2alex - would my child also need to off antivirals to do the Advanced Labs culture? Thanks

[philamom]

You could call them to ask. I found them to be very friendly when I called a few times.

 

My dd was positive Dec 2011, and positive last month.

[Rachel]

Thank you so much for your answers. I went back to look on the CDC website and they recommend 2 test. The first test my son has had several times from different labs and it has always been negative. He has had the Western blot a couple of times but not from Ignex. However, I now understand why you needed to do the Ignex testing. The Ignex Western blot will check for several different bands and only cost $200. This sounds reasonable. How long does it take to get test results back? I do have another question though, and hope someone will be able to answer it.

 

If the Ignex testing is done after your child has had IVIG or Plasma Exchange, will Lyme still show up?

 

My son has already had 3 low dosage IVIG and we have not seen any improvement with any symptoms. This treatment did not make any symptoms worse. Our doctor is trying to get Plasma Exchange approved for my son since he did not respond to the IVIG. My son is on antibiotic right now and this cannot be stopped either. So doing the Advanced Labs test is probably not an option for my son right now.

 

I think I have shared with all of you that my son's illness started in the dead of winter with walking pneumonia and the mycoplasma p titer showed up out of range 2 months later. So my gut feeling is Lyme is not the cause of all this. However, if my son does not start responding to treatment, I will have to do some more testing. Lyme or coinfecctions is the only thing that I can think of that might have been missed. The other reason that I have not pursued this route is because of the testing results that came back at the beginning of this year.My son has had more strep and mycoplasma infections this last year. So the next best treatment for my son to try may be plasma exchange but if it makes him worse, I'll be chasing down Lyme and coinfections. However, I would like to know if having IVIG or Plasma Exchange would make testing for Lyme invalid?

[SSS]

Hi Rachel,

The Igenex WB does need a Dr. signature.

IVIG antibodies stay in the system for 6-8 weeks, so testing would not be ideal at this time.

Low dose IVIG is not the PANDAS/ PANS IVIG- reports are for some the low dose can make 'it' worse, but I understand for immune deficiencies low dose is what is prescribed.

Have you had the Myco titers re-drawn (away from IVIG) to see if those titers are going down?

I am sure you've read here all the experiences of difficultly ridding high Myco often needs combo antibx, and often Lyme is found as well.

Sorry if blunt, it's how I write- also, call ahead your blood draw lab about Igenex blood draw to make sure they will do it--

[sf_mom]

What antibiotics is your son on currently?

 

I can't remember.... does your son have immune deficiencies? Was he IgA and IgM or which subclasses. The reason I ask is deficiencies in 1's and 3's is typical with chronic Lyme. IgA deficiencies typically means there is something else and in our case it was mold. Elevated Nagalase can indicate issues with viruses.

 

Like MomToAlex stated there are many strains of Borrelia like Hermsi, Miyamotoi, Recurrentis. Some of these strains are not easily testable at this time. In the Bay Area Hermsi and Miyamotoi are more prevalent than Burgdorfori. Advanced labs is able to pick up on a spirochete/s but does not distinguish which strain they are finding. Most tests are looking for antibodies to specific proteins of Borrelia. When you limit the specific bands (standard western blot) you limit the proteins of these bacteria and why there is high rate of false negatives.

 

If your child is NOT currently on combination antibiotics you might consider a trail of combination that specifically targets Lyme or Bartonella in advance of testing to see if there is symptom improvement. However, there is typically a worsening of symptoms first then improvement due to Herx response.

[Rachel]

My son is being given 2 ML of Bicillin L-A which is penicillin G every 3 weeks. From all the test results, our cardiologist suspects my son has had Rhuematic fever sometime and the tremors that he is having could be the Sydenham's chorea or maybe some type of autoimmune movement disorder. The antineuroal antibodies that are found in the Cunningham Panel have also been found in autoimmune movement disorders. Strep and mycoplasma can be found in autoimmune encephalities. What I have learned from research is that IVIG, Plasam Exchange, and immune modulating medications are used to treat all of these things including PANS/PANDAS. We need to get these mainstreamed doctors to start embracing Molecular Mimicry research or we are going to have more sick kids.

 

My son did have all his IGG levels and subsets done before having IVIG. Here are the results. I have been told everything is in the normal ranges accept his IgA is low but not deficient.

IGG1 695 Range 342-1150 T Cytotoxic CD3+ CD8+ Precent 20.7 17-35%

IGG2 233 Range 100-455 White Blood count 12,000 elevated

IGG3 49 Range 28-125 IGM 96 Range 47-209

IGG4 27 Range 0-136 IGA 56 Range 71-263

C3 complement 146 Range 73-183

C4 20 Range 15-59

IGE 41.8 Range 27-111

CH 50 compliement 553 Range 400-700

These labs have not been done again since IVIG. My son's mycoplasma titers have not been drawn again yet but I do plan on asking about this. I feel like mycoplasma P and strep have created the problems. My son does have a few grass allergies and has no mold allergies according to testing. This testing was done when his white count was elevated but there was no proof of strep. Some of the grasses he is allergic to might have been causing the elevated white blood count. Is there anything here that would be a tale tale sign to recheck for Lyme? My gut tells me that this is all related to strep and mycro p. Thanks for all your help. If this stuff was not affecting my son's heart and blood pressures, I probably would not be getting much help with his medical condition. Our cardiologist is having to do all the work but looks at any research I send his way. Thank goodness for doctors that will think out of the box.

[SSS]

Rachel, is that it for antibiotics/ all he's been on since Myco/ Strep/ PANDAS?

 

Just to give you an idea, when I was being treated for Lyme, I was taking

2 ml of Bicillin injections 2-3 times a WEEK, and I weigh 100 pounds.

(plus I was taking an oral cyst buster 2 weeks on/ 2 weeks off)

My point: doesn't sound like enough antibiotics to kill high Myco P infection or rampant strep.

Just my opinion from the bleachers out here.

[Rachel]

Hi SSS

 

My son does not have any active infections according to test results right now. My son's IgG's were out of range with several different viruses and bacteria. Which leads me to believe that this is the cause of his medical condition. His anti-DNase antibodies were in the high range and my son would never test postive on a rapid strep test until this year.Our doctor does not feel comfortable leaving my son on a masssive load of antibiotics. My son was doing this for 5 months before he started IVIG. The antibiotics did help some with his low blood pressures. My son is able to take a little less of his blood pressure medications but he is still taking a very high dosage at this point.

 

Our doctor was hoping the IVIG along with the shot would help more with his blood pressure situation. My son's blood pressures will go as low as 82/65. This has started happening more often in the last 2 weeks. It has been 5 weeks since my son had his last IVIG treatment. I really did not think the IVIG treatment was helping at all but I am beginning to wonder since lower blood pressures are returning. After seeing this change, our doctor may reconsider and add another antibiotic especially if he can not get Plasma Exchange approved through our insurance.

 

From research, I know doctors disagree about when an infection or virus should be treated. Some doctors treat for high IgG's and some don't. Which is confusing to me but I get the idea the high IgG's must be playing into the molecular mimcry theory. How else would we have so many sick children.

 

My son may need more antibiotics but I know our doctor is going slow in this area due to the heart and blood pressure issues. I am glad to hear your comments and take no offense. I have learned so much from this forum and glad that I found it. Keep shouting from the bleachers.

[sf_mom]

I would suggest testing for Babesia via Igenex for both strains. Low blood pressure is a symptom of that particular TBI..... just google.

 

Like IVIG, PEX has helped some but not everyone. Perhaps, anti-malarials in combination with shots would help.