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should I consult an LLMD?


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HI! Looking for LLMD in/near Olathe,KS

Could you point me in the right direction? My dd10 has PANDAS/PITAND/PANS. She has been treated for coinfections (myco, HSV6, Coxsackies). She is doing well. Has had 2 viral flares.

Here is why I am wondering:

Band 41 positive.

Sudden increase in eosinophils.

AND

She was on some whopper doses of antibiotics for osteomyelitis (bone infection) for 8 weeks, October to December. And it brought her back the closest to 100% that we have seen in a year!! Some of the antibiotics sound like what LLMDs give for Lyme - Bactrim, Cipro, Doxycyline, Clindamycin.

Makes me say hmmmm???

Am I making something out of nothing in your opinion? I just feel I should investigate this further.

Also, do LLMDs treat for other coinfections, not JUST Lyme? I feel like I read that somewhere too.

Thanks, Laura

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HI! Looking for LLMD in/near Olathe,KS

Could you point me in the right direction? My dd10 has PANDAS/PITAND/PANS. She has been treated for coinfections (myco, HSV6, Coxsackies). She is doing well. Has had 2 viral flares.

Here is why I am wondering:

Band 41 positive.

Sudden increase in eosinophils.

AND

She was on some whopper doses of antibiotics for osteomyelitis (bone infection) for 8 weeks, October to December. And it brought her back the closest to 100% that we have seen in a year!! Some of the antibiotics sound like what LLMDs give for Lyme - Bactrim, Cipro, Doxycyline, Clindamycin.

Makes me say hmmmm???

Am I making something out of nothing in your opinion? I just feel I should investigate this further.

Also, do LLMDs treat for other coinfections, not JUST Lyme? I feel like I read that somewhere too.

Thanks, Laura

 

My understanding is that band 41 is not Lyme specific. A positive band 41 only shows exposure to bacteria with flagella. Exposure isn't the same thing as disease and there are other organisms that have flagella-- pneumonia, for one. Lyme is sometimes hard to uncover, but I wouldn't jump to conclusions about a positive band 41, especially since your daughter may have had myco p at the time of the testing. RE: EOS, liver enzymes tend to bounce around some. Is your doctor concerned? I'm pretty sure that abx treatment can influence liver enzyme results. LLMDs test for and treat coinfections. If your daughter has symptoms, you should probably have her tested.

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Sosudden I am copy/pasting my response to another post about Band 41 below. Band 41 is not considered to be Lyme specific, however it can be the first band to show up positive. There seems to be a lot of cross pollenation between Lyme and PANDAS, so in my opinion if symptoms such as joint pain, lethargy, rage, depression, fevers, sweats, etc in a PANDAS child it warrants an evaluation by an LLMD. In our case we got the Lyme dx first and then got to PANDAS/Myco after further testing and evaluation - we are treating all and seeing different specialists for everything. From reading posts and my own experiences, our wonderful PANDAS docs are somewhat knowledgable about Lyme but not enough to diagnose it in chronic state.

 

My post:

"Just to add it is important to understand which lab did the tests. Quest tests for, if I am recalling correctly, 20 strains of BB while Igenex tests for 300. Igenex (and stonybrook if you ask) will report all bands, for reasons of conflict of interest on the part of the guideline authors in relation to patents they hold and investment/funding from insurance companies, the guideline authors failed to include some Lyme bands that are considered diagnostic by most LLMD's. So the Quest test may not report for example 93 (I'm not sure specifically if they report this one, this is an example) while this band has been shown to indicate Lyme in something like 100% of patients where it is positive.

 

My recommendation for you would be to pursue an evaluation with an LLMD and additional testing by Igenex or Stonybrook, as Band 41 can be the first to show up. It also cross reacts as Dr J told me with hundreds of other infections, so most LLMD's usually disregard that band and focus on the others mentioned. Good luck"

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Our older DS who was originally diagnosed with PANDAS for one year and was band 41 positive only via Igenex. Prior to his Lyme diagnoses we noticed a direct correlation between a higher does of azithromycin and symptom resolution. He did well with PANDAS treatments but was also not achieving full recovery and needed the higher dose antibiotic to maintain improvements. About six months post his last hdIVIG he had rectal bleeding that would not resolve over an 8 week period. Our pediatrician wanted him put under and scoped, instead we pursued an LLMD to see if he could help. He immediately added an additional antibiotic to protocol and checked his urine for die off from the Lyme. He was positive. This type of testing matches antigens/DNA in urine and is called the Dot Blot Test via Igenex.

 

There are many reasons why these tests don't always fully indicate Lyme. In our situation, it turns out it was gestational Lyme for all our children. Two of our children do not produce antibodies and were band 41 positive only via Igenex to the Borrellia. Their bodies just don't recognize the bacteria as foreign and would have never came up positive via antibody testing. Only one child in our family had positive results for Babesia, Bartonella and IND for Lyme. Additionally, not even Igenex is able to tests for all strains of Borrellia. Borrelia Miyamotoi is actually a strain of Lyme that is prevalent in Northern CA and there is currently no known test unless sample is sent to a researcher. These are just two examples of why testing can be inaccurate.

 

I would trust your instincts. Even if it is not Borrellia a "good" LLMD would be experienced in utilizing the antibiotics you outlined in combination with others and would be experienced testing/treating issues like KPU, methylation, heavy metals, mold, viruses, biofilms, etc. It is these "additional issues" that made the world of difference for some in the successful treatment of their PANDAS child. You might contact ILADS for a referral or check some of the Lyme boards for a good LLMD in your area.

Edited by SF Mom
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There is a KC area support group. http://lymefight.info/. I received a newsletter from them for a few months and it always seemed like it was filled with upto date material. They also sent me a list of doctors in the area. Unfortunately, we actually live in a different state so I was never able to attend any of the meetings.

Edited by ShaesMom
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There are many reasons why these tests don't always fully indicate Lyme. In our situation, it turns out it was gestational Lyme for all our children. Two of our children do not produce antibodies and were band 41 positive only via Igenex to the Borrellia. Their bodies just don't recognize the bacteria as foreign and would have never came up positive via antibody testing. Only one child in our family had positive results for Babesia, Bartonella and IND for Lyme. Additionally, not even Igenex is able to tests for all strains of Borrellia. Borrelia Miyamotoi is actually a strain of Lyme that is prevalent in Northern CA and there is currently no known test unless sample is sent to a researcher. These are just two examples of why testing can be inaccurate.

 

 

SFmom -- would it be your opinion that a person with gestational lyme would never test positive via an antibody test?

thanks.

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Not necessarily. I have one twin positive for Babesia, Bartonella and IND for Lyme with 'Lyme Specific Bands' that is gestational. His twin, DD comes up serologically negative for almost every infection, some positive viruses and we have gone to great lengths testing her. Our LLMD believes the one twins positive results indicated how the other is infected but we also did ART and treatment responsiveness to confirm infectious diagnoses.

 

The differences between them are: Male verse Female, her IgG 1s and 3s were much lower (essentially her ability to fight infections), her CAM Kinase was much higher, she has higher copper levels, she has much lower zinc levels, higher lead levels, higher mercury levels, no digestive enzymes while twin enzymes are borderline, she has been underweight while her twin is consistently off the growth charts for height/weight, she is definitely a much slower healer and bruises easily, etc. Just to give you an idea on how slow she heals..... she got a bug bite on her cheek 2 years ago that is finally healing.

 

Their presentation had some similarities specifically rashes but also some obvious differences: DS had OCD, rage behavior, sensory issues, heart condition, DD had language regression, AD/HD type symptoms, high anxiety but no notable OCD/TICS (some OCD initially when treating Lyme and some initially when treating Babesia). Although I usually reference older DS on the forum we consider younger DD to be the sickest child even though she doesn't have OCD or TICS.

 

It is so hard to say why one twin would make antibodies to Lyme et al and one would not. We have even retested her for Babesia hoping for converted results to no avail yet. Maybe its the load of heavy metals that are interfering..... I just don't know but thankfully both her and her twin brother continue to make very slow steady progress toward recovery. We have tried taking her down and off antibiotics two times only to have her relapse within two weeks on both occasions.

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Many of us started out Band 41 positive only. I think in order to know what you are dealing with you need to turn over that stone.

 

I was lucky to have others here alert me to the fact that many PANDAS/PANS kids end up testing positive for lyme. My son is also congenital and negative on a Igenex WB but positive on Igenex PCR in his blood/serum.

 

 

Best of luck, contact either ILADS or Lymedisease.org for LLMD referral.

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