Western Blot Igenex Positive, LLMD says DH doesn't have Lyme

[TOaksMom]

My DH and I recently got tested for Lyme via Igenex WBs. Our Blue Cross insurance in-network ILADs referred but non-ILADs member psuedo LLMD who makes it very obvious once you are an established patient that he doesn't want to treat Lyme patients but accepts them anyway told my DH that he doesn't have Lyme even though his WB IGG was Igenex positive. So now my DH has a Dr. confirming that I'm nuts. The Dr. also told me not to worry that I didn't give DS and DD Lyme congenitally. Both DS and DD have Igenex positive IGM WBs and he has not said whether or not he thinks they have Lyme but after numerous visits he still only wants to treat the symptoms with beta blockers and psych meds and always says we'll address the Lyme at the next visit. My WBs are negative but I do have bands and I got my first tick bite over 30 years ago and we attempted to remove it using a lit match. I have had numerous engorged ticks in my hair over the years. My DH's IGG is positive and my IGG has the most bands which points to us being chronic. My DH can't remember any ticks. My DS and DD's IGM is positive. My DD has been on and off antibiotics for over a year but my DS has never had antibiotics since he was a toddler. My DS and DD have never had any ticks that have attached to them that they have had to pull out.

 

Any comments on our WBs would be very much appreciated.

 

 

DH 52, married to me 30 years:

IGM: Negative:

18 -

23-25 IND

28 -

30 -

31 IND

34 -

39 IND

41 ++

45 -

58 -

66 +

83-93 -

 

 

IGG: Igenex Positive:

18 -

23-25 -

28 -

30 -

31 +

34 -

39 IND

41 ++

45 -

58 +

66 -

83-93 -

 

 

 

Me 52:

IGM: Negative:

18 +

23-25 -

28 -

30 -

31 -

34 -

39 -

41 IND

45 -

58 -

66 -

83-93 -

 

 

IGG: Negative:

18 -

23-25 -

28 -

30 -

31 IND

34 -

39 IND

41 ++

45 -

58 ++

66 -

83-93 -

 

 

 

DS 19, no antibiotics:

IGM: Igenex Positive

18 -

23-25 -

28 -

30 -

31 ++

34 +

39 IND

41 +

45 -

58 -

66 +

83-93 IND

 

 

IGG: Negative

18 -

23-25 -

28 -

30 -

31 IND

34 -

39 IND

41 +++

45 -

58 +

66 -

83-93 -

 

 

DD 16, 1+ years antibiotics:

IGM: Igenex Positive

18 ++

23-25 -

28 -

30 +

31 IND

34 +

39 IND

41 +

45 -

58 +

66 -

83-93 +

 

 

IGG: Negative

18 -

23-25 -

28 -

30 -

31 IND

34 -

39 IND

41 ++

45 -

58 -

66 -

83-93 -

 

 

 

 

[SSS]

I know this may be controversial, but 2 LLMD's made it clear to me: If there are no symptoms, they do not treat Lyme.

It may be, or appears to be, some people's immune systems are able to 'deal' with the infections on their own- carry them.

Some Lyme patients, after their experience, feel it should be treated anyway, in case an immune system taxing event takes place

(like a car accident, birth of a child, major stress situation) then perhaps the disease could surface and cause health issues-

possibly major.

 

I don't know if you or your DH have symptoms, but if your child who does and is suffering, it sounds like you may have to find a proper LLMD to help- which 99% of the time are not covered by insurance.

 

And, a proper LLMD can give you credible and experienced feedback on your test results, and run some additional tests to get a clearer picture. And, a proper LLMD knows about the co-infections, which also must be treated.

Sending good thoughts- goodness it's a lot to take in, I know.

[LNN]

It sounds like you already answered your own question about whether you need a new/literate LLMD (and you might want to contact ILADS to let them know about your experience). I agree with S&S - treatment needs to be based on symptoms, not just labs and that cuts both ways. LLMDs will often treat if you have significant symptoms but indeterminate labs but the responsible ones will also not treat if you don't have symptoms even if labs suggest otherwise. One school of thought feels you may never be able to fully eradicate lyme if you've had it for a long time but as long as you can reduce the infectious load to the point your immune system can keep it in check, a cold war detente is as good as being "cured" in terms of quality of life and is may be the best you can do.

 

As for your kids - I wouldn't get hung up on whether it was congenital. Nymph ticks are so tiny, it's entirely possible they could've been bitten and never know it. At this point, it's about getting treatment if needed. It does look like your DH has lyme but again, does he have symptoms? Under the pinned threads at the top of the forum, you'll see a lyme pin that has a few links on interpreting the bands. Maybe that will help.

[tpotter]

S&S also mentioned about getting the co-infections (which many believe are not co-infections, anyway) dx and treated, as well...if they are there. Those include: bartonella, babesia, erlichiosis, rmsf, anaplasmosis, and probably others I missed or haven't heard about, myself.

 

So, yes, I agree that it's time to find a LLMD who's opinion you can trust. If you need the name of one, mention where you live, and I'm sure people can recomend theirs (I certainly can recommend mine.)

 

Good luck.

[sf_mom]

Our LLMD will not treat positive results without symptoms either.

 

My husband had minimal symptoms of acid reflux, prostrate pain, early evening cough and quarterly stiff necks for several years and even went to Dr. prior to discovering Lyme. What our LLMD's found for him were Parasites (ART testing), Strep (very high titers), Chlamydia Pneumonia (very high titers), Lyme (IND via Igenex with specific bands), Bartonella (ART testing), Babesia (ART testing). We also tested him for mold, looked at inflammation markers, biofilms and none of these proved to be an issue. Our primary LLMD did not want to treat him but gave a stern warning on lifestyle related to work stress and physical exercise. Our secondary LLMD who we see 2 to 3 times a year wanted to treat parasites and Lyme plus co-infections herbally. Those treatments have resolved all symptoms for now and we are no longer treating him for specific infections. His strep titers are dropping with ASOs that are now sub negative and Anti-DNase-B in 400's but also dropping year over year. We have also treated him for yeast recently along with all family members.

 

I have several friends who are HIV positive, they both do a ton to stay healthy and not develop full blown AIDS. To me this is similar, we do a lot to ensure DH does not develop full blown Lyme symptoms with a much healthier diet (lots of green veggies), regular detox drinks, proper supplements, exercise. He feels much better and does not get sick as regularly which as you know can be tragic if you are exposing stuff to individuals with full blown Lyme/PANS (the kids and myself).

 

I thought I'd mention several other tests that might help confirm Lyme one way or the other.

 

1. Band 30 - 31 Epitope Confirmatory Testing via Igenex: When positive very accurate: http://www.igenex.com/Website/#

 

2. Lyme Dot Blot Testing for Antigens via Igenex: Looks for antigens verses antibodies in urine:

 

3. Advance Labs Lyme Culture: http://www.advanced-lab.com/

 

Igenex holds your blood sample for a period of time. You could even have your Dr. call Igenex to do confirmatory test regarding band 31 for DH and yourself.

Edited March 29, 2013 by SF Mom

[TOaksMom]

Thank you for your replies. All four of us have tons of symptoms. Sorry, I didn't mean to imply that we did not. I started with symptoms about 30 years ago, my husband about 20 years ago. My kids have had on and off symptoms since birth but more severe symptoms when they started puberty.

 

A problem with the two local wannabee LLMDs we have seen so far has been the approach to band-aid the specific symptoms with drugs that only mask the symptoms. From my experience with in-network insurance LLMDs, I think they do not want to jeopordize their status with the insurance companies by doing anything they would question as being unconventional. They also have you come into the office very frequently for quick visits which appears to be to charge the insurance co. and they always have available appts. If you ask for anything, they will give it to you but unlike a real LLMD, they do not have an experienced approach to treat lyme & co or any infectious diseases and seem afraid of it. Both of the LLMDs we've seen were ILADs referred.

 

We've had $4000 of Igenex tests done for Lyme and co-infections but not the band 30-31 test. When I saw the charge on my credit card and asked the LLMD why he didn't tell me how much it was going to cost he replied that he didn't know it would be so expensive. The only postive results were the WBs I noted above.

 

My kids are going to see Dr. Chitra Bhakta soon, a real non-insurance LLMD who is about 80 miles away. She is having my antibiotic free son get the $500 Advanced Labs Lyme culture test done which seems like a great test for chronic Lyme and I wish we would have done that one after the postive WBs instead of all the extra Igenex PCR lyme tests. I also want them to see Dr. Nancy Mullan for their methylation/psych issues who is close by but I'm waiting for our Yasko and 23andMe results to come in first.

 

Our kids getting treatment is more important than us right now. After our current doctor telling my already skeptical husband he doesn't have Lyme there's no way he will go see another doctor about it. I am not hung up on it being congenital or not. It is what it is and in retrospect, there are a lot of symptoms and illnesses both kids had when they were infants and toddlers that point to having been born with some not so nice microbes. I'm grateful for what little understanding I have about what might be wrong with us compared to not knowing and not doing anything about it.

 

In writing my disjointed post I was hoping to see if anyone could see anything unusual with our WB results or can tell if the bands are picking up something besides Lyme. We all have bands 31, 39, and 58. The kids also have 34 and 83-93. My DD and I both have 18. My DS and DH both have 66. Both kids have very high IGG mycoplasma pnuemonia titers as well but have never had lung pneumonia or any kind of lung/asthma issues.

[lfran]

Sent you a pm.

[TOaksMom]

I'm updating this post to keep the continuity. My daughter got the $600, 10 week long Advanced Laboratory Services Lyme culture test and her July 30th report said she had growth and we have the microscope photos of the spirochetes from them but I can't figure out how to add the link to a photo of them. If someone could tell me how I will. In the last post to this, Lfran had let me know about the band 58 being significant for European Lyme which is Borrelia garinii and Borrelia afzelii. Borrelia burgdorferi is the more recent US Plum Island / Lyme, Connecticut Lyme.

 

So after getting the positive growth culture results I had asked Advanced Labs what the specific species we had and they said: A positive result indicated that ONE of the following species is present in your culture: Borrelia burgdorferi, Borrelia garinii, or Borrelia afzelii. You can, however, choose to perform a Monoclonal Antibody Add-On for $300.00. This will stain ONLY Borrelia burgdorferi. If this is an option you would like to consider, please let me know ASAP, as we only keep the culture for a week after the results are reported.

 

So if you want to know the exact species, you need to indicate it on the lab order when the test is submitted. It will cost more but you can't get the specific results after. We did not do this. The ADL Lyme culture test requires 4 larger than normal tubes of blood. Current Lyme cases can get a positive result after 10 days/2weeks and they report everyone at 10 days, in my daughters case it was non-conclusive. Then they put the culture away for 8 more weeks and they do not report on it until that time has elapsed. Seeing the microscope pictures of the Lyme spirochetes that were most likely cultured from cysts is very humbling despite symtoms and all the Western Blot IGM/IGG crap.

 

Although I've been suspecting the Lyme neuroborreliosis diagnosis as an explanation for my daughter's bizarre neuro issues, the actual culture test results have made one of our non-believer docs finally accept it. He had ordered every non-Igenex Lyme test possible and only believed the negative results instead of the positive IGM Igenex Western Blot we originally gave him until he saw the positive Lyme culture test. Something to consider.

 

I got shell shocked from the somewhat negative replies on this post saying that docs will only treat real symptoms when there's an Igenex positive Western Blot result and I stopped reading the forum. That wasn't my point and I wasn't as interested in treating as I was in understanding what was wrong with my family. I had started this post because I believed my daughter's and son's positive IGM Igenex WBs but my husband's IGG which is obviously a lot older but still positive was questioned by the same doc that now is digesting my daughter's positive Lyme culture results. Our doc had told us that he unequivocally did not think my daughter had Lyme and was instead willing to treat her neuro issues with psych meds even though he is not a psychiatrist. It's not like we hadn't gone through the PANS/PANDAS diagnosis with Dr. T. which we did and we did the antibiotics which had only made positive, significant results. But unfortunately we never took the antibiotics long enough in the past to maybe make a real difference and our current real LLMD took a 3 week vacation shortly after getting the positive culture results so we are still waiting to meet with her. Our non-believing wannabe LLMD doc has my daughter taking 100mg of minocycline twice a day.

 

Based on my family's autoimmune symptoms, I think we may have had the European band 58 Lyme for several generations. But I have personally pulled out more engorged ticks from my scalp than I can remember when I lived in Arkansas. My DD16 has also spent several prior summers in Arkansas although she can't remember any tick bites. She could have been re-infected which triggered her current symptoms but she had so many symptoms since she was born too. She also had the MDL, Medical Diagnostic Laboratories battery of tests and is positive for anaplasma, mycoplasma pneumonia, chlamydia pneumonia, herpes 1, 2, and 6, cytomegalovirus, Epstein-Barr EBNA-1 and EA-D.

 

Neuro inflammation / neuroborreliosis from congenital Lyme and the resutling neuro issues started early in life for my daughter and son. Looking back, fussy eating from the get-go, sibling interactions, irritability, so many early signs that just kept getting worse. We've done the genetic tests and there are issues where my daughter doesn't deal with chronic illness as well as others might and has detox issues. I'm sad that so many generations have been born with way too many bacteral and viral infections. I'm glad that the current testing is getting better and I hope that in the future pregnant mothers and newborns are routinely tested so they know what they are dealing with early on. Unfortunately though big pharma will probably be keeping us from easily finding out the real reasons behind our symptoms for a lot longer.

 

Although my kids have had issues since they were born, all of our symptoms got so much worse after we got our electric smart meter installed about 2 years ago. We've been without our smart meter for about 6 months now and feel a lot better. The installer came to our door to be greeted by me in my pajamas looking half dead and told me that they would be replacing the smart meter with a non-networked but newer digital meter instead of the old analog type like we had before. I explained to him that we had very bad Lyme symptoms and that whatever he needed to do would be better than the current smart meter. After he left I looked at the new meter and it was the old non-digital kind so I guess he had that as option and felt sorry for me. Radiation from smart meters, wi-fi, DECT phones, cell phones, improper house wiring, etc. supposedly makes our bacterial and viral infections worse. I personally can attest to that. In addition to getting the smart meter replaced with an analog one we got rid of our DECT wireless house phones and replaced them with the old wired kind and disconnected the wi-fi router and only use wired internet. Simple steps that help.

[SSS]

Oh dear, I hope you aren't referring to me about being shell shocked/negative replies about my comment that our LLMD's will only treat if symptoms, and you stopped coming to the board.

 

At the time I was thinking of your title 'DH positive test, LLMD says he doesn't have Lyme'

and then read your DH believed that-

thinking then your DH must not be sick w/ symptoms.

And, I was thinking what my LLMD told me about my other 2 healthy,

neurotypical children, that even if I decided to test them,

and their tests came back showing exposure to Lyme,

that LLMD would not treat because they are healthy and lives are not affected-

 

I'm sorry- did not know you were referring to your children, who were suffering.

Doing the best we can, sometimes we read fast, don't have all the details-

Very supportive board here- wishing your family health -- S

[nicklemama]

Those band 41s can be indicative of coinfections. My DSs was positive. He came up positive for ehrlichia and anaplasma thru Quest and we are now treating for those coinfections and he's a ton better than he was and he had made a lot gains from PANS treatment.

[rowingmom]

So your children haven't seen Dr. Bhakta yet? She should throughly investigate coinfections for you.

 

Although DD's lyme results from Igenex were IND, and therefore considered positive by our LLMD, it was bartonella that seemed to be causing her psychriatric/PANS issues. Our daughter is also believed to have congenital infections.

 

Antibiotic treatment for bartonella caused herx reactions of both her bartonella pain and PANS/psychological symptoms which resolved over time. She was treated for 2 years with multiple combinations of abx and has now been weaned from them for 4 months with no sign of relapse, only continued healing (knock on wood). We continue with a Buhner herbal protocol to address remaining inflammation and any remaining infection.

 

I wish we could dispose of our smart meter as easily as you did - Ontario is very insistant that you follow all rules regarding updating of meters. No analogue meters allowed. I too have discontinued DECT phones and computer wireless.