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As everyone knows I've been posting a lot about Lyme Disease and today we finally had our appointment with one of the leading LLMD. I had a whole list of questions with me and I thought I'd post what I can remember.

 

Band 41 could be a lot of things.... he rattled off several but can't remember them all.

 

It is TRUE that if the child got LD in utero they will potentially not make antibodies for the bacteria.

 

If the child does NOT make antibodies they treat it similarly with antibiotics. They can also do urine testing once a cyst buster (flagyl, tindomax, etc) is used and test for DNA of the bacteria (we will be doing this with our son).

 

Is the spirochaete the only known type of bacteria to produce herxing response? There are MANY bacteria's that will develop a cyst phase and I assumed this all related to herxing cycle.

 

Can you get LD from IVIG? Highly unlikely due to filters used... more likely to get a virus from IVIG.

 

CD57 is NOT a reliable test for children

 

Is LD contagious? Some Dr.'s believe it is but there is not enough proof/studies to confirm one way or other. Dr. H does not believe it to be the case.

 

Is it sexually transmitted. Yes he believes it to be sexually transmitted.

 

In Neuropsychiatric LD.... is it considered to be auto-immune. He refers to the HYPER IMMUNE system, the immune system is so rattled by infection/co-infections that body goes nuts and starts attacking everything. Once the infection/infections are gone the HYPER reaction stops.

 

Do children who are diagnosed with Chronic Lyme typically recover? Average recovery time is two years and children that do not produce antibodies to LD may so in the future once recovered.

 

Do high immune complexes 'typically' produce a false negative for LD? YES

 

Important things discussed: Mycoplasma can be very difficult to detect, many strains and difficult to eradicate ....... wanted to know the specific lab used to test previously. Once the immune system goes into a HYPER reaction the child will have difficulties with allergies, environmental toxins, molds, viruses, additional bacteria's, etc as well as multiple, multiple symptoms. He felt Custom Probiotics was a great resource for probiotics. Should absolutely take Bentonite Clay away from antibiotics will bind to many things inclusive of antibiotics. His recommendation would be to take antibiotics after meal and Bentonite Clay right before bedtime. He was very interested in the CaM Kinase testing and had not heard of it previously. He said when the mother has Lyme about 60% of time it will pasted down to the child in utero. He has helped a lot of Autistic children to full recovery. He believes their full recovery depends on frontal lobe damage while in-utero. A lot of MS is Lyme, not all. Uveitis is strongly associated with Lyme 'red eyes'. If you suffer from Psoriasis/eczema and your child has 'PANDAS' you should check for Lyme... its another strong indicator. You can be an asymptomatic carrier of LD.

 

Our personal situation: He did not say that my son specifically has LD but will be treating him with a cyst buster to test DNA urine. He was convinced he could help with remaining symptoms (mood liability, mild TIC, intestinal issues) and that my son would see a full and lasting recovery and be able to handle strep in the future. He would not comment on my younger children until he can see them personally. He did order testing for me. If I am positive he will order testing for my husband and we will then focus on the younger child. Wanted to know when we last vaccinated and if we were continuing.... I said absolutely not until we could get things figured out and he just smiled.

 

That is all I can remember at the moment.

Edited by SF Mom
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Danny takes flagyl,does that help with ld if you have it??

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Me being symptomatic, my son's recovery cycle and herxing response to antibiotics, shedding symptoms when multiple antibiotics were used, all my children having elevated CaM Kinase, my oldest only had slightly elevated ASO titers, no Anti-DNase-B, no mycoplasma, my younger children have no ASO, anti-DNase-b, no mycoplasma, persistent rashes in my younger two, our younger twin boy has Uvietis with both of them having Livedo reticularis, etc. etc.

 

As well as Lyme can present similar to PANDAS.

 

 

 

SFMom, I don't remember as I haven't read through all past posts but what is it that led you to believe it is LD with your son?

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Thanks for the update SF Mom. Good info. I am interested in this. I know you asked if you could get Lyme or not with IVIG, and, thankfully, no...but, did you ask him if you can get the antibodies to Lyme from IVIG? So curious.

 

Thanks!!!!

 

Did you get a feeling from him or not that band 41 in and of itself is significanT???

Edited by P.Mom
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Thank you SO, SO much... This answers so many questions.

 

I was just talking to a friend who has a cousin with PANDAS. As it turns out - the Mom was diagnosed with MS but found out about a year ago it was lyme... now the child is being tested for lyme. How many times have I heard that type of story in the past few weeks?

 

How many of us have some sort of unusual autommune problem that has been lurking and that we've not been attending to? I wish we could all get IGENEX testing covered by insurance to make it easier to find the underlying problems in our kids and the whole family!

 

Thank you for sharing all this information. This is priceless!

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I did ask him this question about IVIG and his answer was NO. He said the response would be similar to when they vaccinated for LYME.... all the bands would be positive not just some.

 

He did feel it was significant given our son's symptoms, response to different antibiotics, immune suppression treatments, the possibility that its congenital, etc. He was very curious as to how our son improved when we added Omnicef to Azithromycin. Igenex clearly states if you are positive for ONE OF THE DOUBLE STARRED bands in a negative report to retest in 4 to 6 weeks or use alternative methods of testing. We will be using the alternative method because 'I think', he 'thinks' its congenital and our son doesn't make a ton of antibodies for Lyme. Again, we'll be forcing the bacteria out of its cyst form and testing for the DNA in the urine. I think he is targeting the strains that are known to produce neuropsychiatric symptoms i.e. Bartonella.

 

BUT, we will also be testing for molds, allergies, C3a level, C4a level, allergic reaction to penicillin (he was focus on the rash our son got to amoxicillin), stool samples for bacteria/parasites, etc.

Edited by SF Mom
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Sitting in the waiting room was enlightening to say the least!! The sick kids, sick parents, sick kids & parents together.

 

Again, I'll urge any parent with auto-immune issues to test for LYME... AND, especially those diagnosed with MS, Chronic Fatigue, Fibromyalgia, Rhuematoid Arthritis, Crohn's or Psoriasis/eczema.

 

I was handed a form: UNDERSTANDING THE CURRENT POLITICAL ARENA

 

Two standards of care:

 

1. Some physicians rely on the narrow surveillance case criteria of the CDC for clinical diagnosis even though the CDC cautions against this approach..... These physicians will fail to diagnose some patients who actually have Lyme disease. As a result, many patients go undiagnosed or misdiagnosed as having autoimmune diseases, Fibromyalgia, MS, ALS, Chronic Fatigue, Depression, Anxiety, etc. or patients may find that their doctors relies upon biased or misinterpreted information and/or avoids treatment that we have found successful with our patients.

 

2. Other physicians use broader clinical criteria for diagnosing Lyme Disease rather than the CDC criteria along with diagnostic tests that infected tick populations have expanded beyond traditional borders. While diagnostic certainty is being debated in the medical community, some physicians believe it is better to err on the side of treatment because of the serious consequences of failing to treat active Lyme Disease. These physicians sometime use the clinical responsiveness of a patient to a specific treatment to assist in their diagnosis. It is also true, however, that Fibromyalgia, Lupus, Rheumatoid Arthritis, etc. often exist alone without any relation to Lyme disease, Babesiosis, Ehrlichiosis or Bartonellosis. In these cases, a rheumatologist or neurologist may be best suited to mange a patient's care.

Edited by SF Mom
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SF Mom, Thanks for posting info on your appointment. I'm sure you were glad to finally have some of your questions aswered. Sounds like you are in good hands, and that further testing of your family, and trial of cyst buster will provide further information. (you'll have to let us know what cyst buster you are using -- Dr. J always used Tindamax with my daughter). Be prepared -- it can really stir things up!

 

I hope that one of the important things people learn from your post, it that how experienced LLMD's are in considering, and treating, people with multi-infectious issues. They are NOT solely focused on lyme, but are skilled at determining various possibilities. They will run ALL the tests, use their best clinical experience, and help you sort through things.

 

AND most importantly, an LLMD will treat you/your child until your symptoms resolve -- even if it takes years! You will not be left high and dry.

 

Best of Luck.

Mary

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Ok...maybe I am not following correctly....so, IVIG can result in a false positive Lyme test??? From reading up on the vaccine......it is not reliable/very useful, and would not cover all bands/reactions? :wacko: I am gettiing confused, and more skeptical/curious on this Lyme thing. I did pull a tickk off my younger son when he was 3......but, nothing from my older son. I do have some "issues".....fatigue, insomnia, costocondritis, muscle pain, anxiety.....and, about 15 years ago , when we basically lived in the woods of PA.....I got bit by something on my butt. :o I thought it was a spider bit,(still might have been) but, I distinctly remember the huge red circle that formed around the bite. It was blistery in the middle, and I remember not feeling well, then, yes, I did this... I took a knife and sliced the center and drained it a bit :ph34r: ........it went away... and I was fine since then until after I had my first son about 5 years later?????? :huh:

 

Both boys only test for band 41....my younger son 41 IGM and IGG, my older son 41 IGG.

This is the kicker....two years ago, I had a huge vamp in crazy symptoms (but, I also had a ton of bad stuff going on and a pretty serious, sudden loss in my immediate family)....I thought the vamp was due to stress/anxiety (still could have been) WEll, I got so bad I couldn't get out of bed, barely. They tested me for Lyme and I came back positive on Elisa...very positive. They then ran a western blot and I came positive to all 3 bands on IGM but nothing on IGG. It was considered a positive result even by CDC...BUT.....although some docs thought it was Lyme (I did se a certified Lyme Literate Doc)...many did not. And, because I was sick for about 4 months before tested, and, only showed IGM response...they figured it was some other autoimmune thing/illness going on (because by then I should of had an IGG response...strictly IGM positives can be false if tested late).... they were particularly thinking EBV because they tested for that too and my antibodies were sky high and, EBV is one of the things indicated in a false positive IGM western blot. I think EBV doesn't get the credit it deserves...they are linking it to chronic fatigue, etc) So, (my antibodies to EBV are always kinda high, have been for years....hence, fatigue?)....but, the stressors of my life were said to weaken my immune system and let the EBV run ramped. So, Lyme was really pushed to the side. (however, out of fear, I did let the LLMD treat me for over a year) Long story........I never really believed it was Lyme...still skeptical...but now this stuff with the kids...UGH!!!!!!!!!

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Mary I do feel very comforted that he'll see all my children to wellness and that is such a relief. I am extremely pleased by his knowledge of bacterias, molds, viruses, parasites, etc.

 

I'm picking up the cyst buster this morning and will post the name when I actually know 'what it is'.

 

Again, truly THANK YOU..... it was your's and Lyme Mom's post as well as Elizabeth insistence that lead us down this path. Dr. H has only been five minutes from my house this whole time!!

 

-Wendy

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