Igenex Band 41

[MamaBeartoCharlie]

Received DS's Igenex Western Blot results today. All negative except band 41 which was single + on IgM and ++ on IgG.

 

I searched the forum and read through many interesting older posts, including those from Dr. T as well as other snippets online from Dr. Charles Ray Jones. Much of the information is now many years old, and it looks like IGenex used to asterisk band 41 but according to their own information these positives for band 41 are not indicative of Lyme. I understand it could be other flagellated bacteria causing the postive as the band isn't Lyme specific, but what else then would it be? The info online seems conflicting as to whether this result suggest Lyme or is the type of postive most people tested would have.

 

Scares me a little reading positives for band 41 with no other bands have turned postive with treatment, or that people with these results have gone on to test postive via urine.

 

We did 8 weeks of Zithromax which did little to help and just created GI symptoms and lots of mood problems and rage (herx?). Tried Biocidin for approximately 8 weeks as well, also seemed to cause rage and mood issues. Currently DS is off of all meds and supplements for a reset.

 

Whole house is sick and he was slipping last week but has had a remarkable improvement since we started giving him pomegranate/tart cherry juice (totally by fluke but apparently both fruits target inflammation and particularly brain inflammation!).

 

MD prescribed Keflex at a high dose - 80 mg/kg - soo 2000 mg for our 56lb six year old. We knew the Lyme results would be coming back today or tomorrow so decided to wait to start the Keflex as he seems to Be much better since Friday (although far from healed as he still tics - just not nearly as frequently and he smiles a lot more now 😊).

 

Would be curious to know if anyone has more recent information on band 41 only positive results. Unsure about the right next move - further testing? Try the Keflex just to see if he responds as the MD has suggested? I'm afraid to make things worse as we want to take both kids to Disney in a month for the first time. We all really need some quality together time in the sun! He's manageable right now - for today anyway!

[maybaby]

I've done research myself on Band 41, as my DD only tested IGM: 31+, 39 IND, 41 IND and IGG: 41IND on the Igenix test. You are right that Band 41 indicates the presence of a flagella spirochete in your system, which can't be good! Based on my DD's Igenix result, I was skeptical that she had lyme, so I did further testing.

 

So, I recommend further testing. We did the DNA Connextions Lyme Urine Test. You can order it directly and have the results sent to you. Their test is quite accurate, since they use a sensitive technique called PCR. It will test for lyme and some co-infections (babesia, bartonella, etc). You can even have the results rushed and you'll find out within a few weeks.

 

BTW- I also tried 8 weeks of just Azith with my DD last year. I was shocked to see such a negative reaction from her. She became very emotional, mean, unable to focus, and was unable to feel calm/centered. I stopped b/c my LLMD told me I needed three different type of antibiotics to treat lyme and I couldn't emotionally move forward with adding two more. So, we switched to herbal treatment. We are still treating her with herbs. We tried going back to antibiotics recently but she has such bad herxes that we just can't do it during the school year. We may try again this summer....

[sf_mom]

I don't read or post to the forum much anymore but felt it important to tell you our story.

 

Older DS was 5 years old when he had his sudden on-set. He had just had his MMR Booster, came down with strep and was exposed to a child that had a full body rash and fever (told it was a virus) all within a very short period of time. He woke a different child after these events.... it was a perfect storm. To make a long story short we treated him for PANDAS one year. He did well with treatment but symptom remission was not lasting. Six months post his last HD IVIG (he had three) there was blood in his stool ongoing for a couple months. It was at this point we decided to investigate further and saw LLMD to investigate Lyme.

 

It turns out the blood in his stool was from an intestinal parasite and the bleeding resolved within 2 days of starting Alinia. We tested him for Lyme and was only positive for Band 41. Because I also had mild symptoms I was tested along side our son and I came back positive. When children are born with Lyme they often do not make antibodies to the bacteria because it doesn't recognize the bacteria as foreign. We then decided to go further with our testing..... I wanted more concrete positive results to prove Lyme. For me, they did the Epitode Band - 31 (I was positive) and for my son they did the Dot Blot test with provocation (he was positive). The Dot Blot looks for the antigen (like DNA) in urine and not antibodies.

 

Anyway.... we ended up treating him for Lyme pretty much for 7 years. Our son is now 12 years old and currently 100% in remission. It took a long time to treat, recovery was very slow at times but he looks like a healthy young man now. He is 5'8", 115 pounds, in 7th grade, bright, thriving athletically and thinking about going to boarding school for HS.

 

We recently retested him for Lyme and the only band that was positive was Band 41. When we initially tested him we also looked for viruses and co-infections. He was positive for several infections and viruses but just wasn't glaringly positive for Lyme until we did Dot Blot test.

Edited February 15, 2017 by sf_mom

[AmericanVenus]

I don't read or post to the forum much anymore but felt it important to tell you our story.

 

Older DS was 5 years old when he had his sudden on-set. He had just had his MMR Booster, came down with strep and was exposed to a child that had a full body rash and fever (told it was a virus) all within a very short period of time. He woke a different child after these events.... it was a perfect storm. To make a long story short we treated him for PANDAS one year. He did well with treatment but symptom remission was not lasting. Six months post his last HD IVIG (he had three) there was blood in his stool ongoing for a couple months. It was at this point we decided to investigate further and saw LLMD to investigate Lyme.

 

It turns out the blood in his stool was from an intestinal parasite and the bleeding resolved within 2 days of starting Alinia. We tested him for Lyme and was only positive for Band 41. Because I also had mild symptoms I was tested along side our son and I came back positive. When children are born with Lyme they often do not make antibodies to the bacteria because it doesn't recognize the bacteria as foreign. We then decided to go further with our testing..... I wanted more concrete positive results to prove Lyme. For me, they did the Epitode Band - 31 (I was positive) and for my son they did the Dot Blot test with provocation (he was positive). The Dot Blot looks for the antigen (like DNA) in urine and not antibodies.

 

Anyway.... we ended up treating him for Lyme pretty much for 7 years. Our son is now 12 years old and currently 100% in remission. It took a long time to treat, recovery was very slow at times but he looks like a healthy young man now. He is 5'8", 115 pounds, in 7th grade, bright, thriving athletically and thinking about going to boarding school for HS.

 

We recently retested him for Lyme and the only band that was positive was Band 41. When we initially tested him we also looked for viruses and co-infections. He was positive for several infections and viruses but just wasn't glaringly positive for Lyme until we did Dot Blot test.

 

 

Thank you for sharing all of this. Our Bio-Med doc is a LLMD, but he told me that the band 41 wasn't enough to be considered Lyme. Both of my boys have 39 and 41, neither have been bitten by a tick and I have (several times, one put me in the hospital), so it appears they have the congenital band. My older son (6) has PANS/PANDAS and for the first time in 2.5 years, he has a fever. We've been treating for about a year with various abx, supplements, and diet. No co-infections were found in the IGX test. So you think Dot Blot is the way to go?

[sf_mom]

You might test yourself first. See if you are positive. Also band 39 is very Lyme specific. Band 39 alone would cause me concern.

 

The Dot Blot with provocation would be the way to go for those potentially suffering from congenital Lyme. Provocation (antibiotics or herbs) loads them up so the bacteria is killed and the antigen ends up in their urine. You collect a urine sample every other day, typically starting 48 to 72 hours after starting provocation and three different samples are tested. Our LLMD often uses doxy or similar.... an antibiotic that is known to 'really' kill Lyme.

 

I am actually shocked your Bio-Med Dr. didn't show concerns over Band 39 present on result. I would speak to him about the possibility of this being congenital Lyme. If you find him to be a non-believer in gestational Lyme, I would find another LLMD no matter how much you like him.

 

Do you have any symptoms?

[MamaBeartoCharlie]

Thanks so much for sharing your stories!

 

I do wonder if it's congenital lyme. I had a stillbirth at 25 weeks in my pregnancy before DS was born. My daughter's autopsy was inconclusive but during labour I spiked a crazy high fever and was pumped full of IV abx so I've always felt it was an infection that caused her death. She also went from developing perfectly normally to suddenly having reduced movements. She slowed the night before she died but was still moving. The next morning I couldn't feel her move and went to hospital. She was alive but had hydrops on ultrasound and still wasn't moving. Six hours later we watched her die in another ultrasound. The way she died made a cord accident not really plausible to me. I always worrried I'd picked something up swimming in the lake at the cottage the weekend before she died but maybe I got bit by a tick then or maybe I've been carrying Lyme a lot longer (I have had knee pains and unexplained swelling since preteen along with a history of illness and weird immune responses myself in highschool - not to mention repeated strep!)

 

When I was pregnant with DS I went into preterm labour at 23 weeks - carried him to 33 with bedrest and meds to stop the contractions. Then with younger DD, I was on abx throughout my pregnancy (for a positive urea plasma swab) and the abx worked better than anything else to stop my contractions. Could just be the urea plasma but my bodies reaction and the death of my first child make me think I may have had something much nastier going on that just that! I think being on abx in my last pregnancy may have helped my daughter.

 

I also have had some major fatigue and mood issues etc since my first pregnancy in 2009 - grief, followed by having 2 under 2, and a crazy high stress job always seemed to explain it but now I've got a host of other issues and am really struggling physically and emotionally!

 

I definitely should get myself tested! Going broke with all this though as none of these speciality lab tests are covered under our Candian government health care.

 

Our ND recommended we use the blood already at Igenex to check for co-infections - we just did Lyme to start with. But the costs are still about $2500 to do that. I'm wondering if another urine test wouldn't be more cost effective and show more now. If we don't move on Igenex quickly we will have to do another blood draw though.

 

We also want to do an OAT test and 23 and Me to look for metabolic issues just to know how best to manage this little guy. It's hard to decide where to keep spending.

[sf_mom]

It breaks my heart to read your history. Typically symptoms worsen after pregnancy. Your instincts are strong and I bet you are right that there was level of protection from antibiotics while pregnant with your second DD. Did you feel better while taking them?

 

I would not waste the additional money on testing your son 'at this moment'. I would test yourself first and maybe not use Igenex. Use what is covered by insurance. See if you are positive. If not positive then consider testing yourself via Igenex. If positive on either test then you have your answer.

 

I also think I had Lyme for many, many years... My immune system kept it in check. I too passed my symptoms off..... Just thought I was recovering from rough pregnancies and having three kids, 2 of them twins.

[bws1565]

It breaks my heart to read these stories, and somehow it niggles in the back of mind, that just maybe, I might be in the same boat.

We have had trouble with our two oldest; one had band 39 and 41. The other had band 41 and 93.

 

I distinctly remember, being about 16 years old, and falling asleep during dinner. I have not have my full strength since. My mom was concerned enough to test me for mono etc, but who thought of Lyme then? (over 20 years ago...)

 

Interestingly my younger kids don't have Pans related issues.

[Sirena]

Band 39 would concern me too and 41 is known to be the first to show up usually.. If your body is struggling to mount the immune response, you can be PCR positive and still not present with enough bands for a positive western blot. By the way, MDL does a decent western blot and it seems lab corp may have updated theirs.