Can anyone help me explain Chronic Lyme/PANDAS

[kmom]

So I finally had my kids' very belated b-day parties tonight...we were waiting till everyone was feeling better. It was a hit thank goodness. We had it a gym that has a lot of gymnastic equipment. I am feeling the effects of jumping on the trampoline and jumping into the foam pit! Within an hour I felt the pain of Lyme. It's so annoying when you realize your body can't handle what it used to.

 

Anyway, a mom at the party, who happened to get Lyme while camping last summer (was fortunate enough to get sick and have the bulls eye rash and treated right away) said, "I heard your daughter was dx'd w/ Lyme." I told her that was correct and that my son and I were dx'd too. Then she said, "So is that in addition to all that 'other stuff' that went on in the last year?" (Other stuff meaning PANDAS--she couldn't remember the name.) She had heard some of the nitty gritty stuff but who knows how much people comprehend when it's not their reality. I started to explain and then got interrupted which I was relieved b/c I honestly didn't have it all straight how to present it. To her Lyme is a recent tick bite, rash, flu-like symptoms, abx tx and gone for good. What a great concept! Wish that was our reality. So does anyone have any advice on how to explain all this concisely without people thinking we're the loony sick family taking Lyme to the extreme??? I felt so overwhelmed talking to a non LLP (Lyme Literate Parent) that I couldn't even give a quick answer on how it went from PANDAS to Lyme. I couldn't find a way to simplify it. Not that I can always wrap my brain around it perfectly anyway! I will be seeing her @ an event next week so I know the question will be revisited... Any advice is greatly appreciated.

[LNN]

I've had the same struggle trying to explain this to people. You feel crazy as you try to explain not one but two mis-understood conditions that have made your kids so "invisibly" sick.

 

You know so much in your head that it gets really hard to explain something briefly. But you can give them the analogy of someone who's being treated for cancer getting the flu - how healthy people can get the flu and be fine the following week. But someone who's already fighting a serious illness can be overwhelmed by the same flu. The body can only fight so many wars at a time. So you may not know which illness came first - lyme or strep. But the one-two punch probably overwhelmed your child's immune system and resulted in symptoms that were more serious than what she experienced. I'd leave it at that. The simpler the better.

[MichaelTampa]

One way to look at it is multiple chronic infectious disease--mycoplasma, strep, viruses, worms, other parasites, lyme, bartonella, all mushed with heavy metals, weakening immune system, causing autoimmunity, and infecting organs and other tissue.

Edited January 30, 2011 by MichaelTampa

[Bill]

One example I've used is to ask them if they are familiar with Rheumatic fever (technically I guess Rheumatic heart disease). Seems like everyone knows that strep can affect the heart in extreme cases. If they are, I then hit them with "well sometimes instead of the heart, strep can affect the brain." That usually stuns folks into silence. I'm not sure it's worth going down the Lyme vs. strep vs. bartonella vs. whatever discussion. My son has all of the above and at this time, there's no way to know what came first or which one is causing what symptoms so the quick answer works without slogging through the complexities.

 

bill

 

Quick edit as I realized that it is not clear to me whether it is the bacterial infections attacking the brain directly or it is the body's antibodies being tricked into attacking heart/brain cells. Does anyone know which is the case?

Edited February 1, 2011 by Bill

[KeithandElizabeth]

Hi Bill:

 

I have read that lyme, mycoplasma, bartonella and babesia can go directly into the brain. I am not sure about strep.

 

The following is a video of a lyme researcher, Dr. Sapi, describing lyme and biofims. She does mention that lyme loves the brain because it is a very "juicy organ." Lovely thought. LOL.

 

 

Elizabeth

[MichaelTampa]

With PANDAS, it's the antibodies causing the problem. With lyme, I don't know if they really know, but I more frequently hear the docs leaning toward it not necessarily being the bugs eating through the brain and causing problems that way, but more toward all the various chemicals (not particularly antibodies) that exist as a result of the bugs being there.

[Bill]

Hi Bill:

 

I have read that lyme, mycoplasma, bartonella and babesia can go directly into the brain. I am not sure about strep.

 

The following is a video of a lyme researcher, Dr. Sapi, describing lyme and biofims. She does mention that lyme loves the brain because it is a very "juicy organ." Lovely thought. LOL.

 

 

Elizabeth

 

 

Excellent video! 5 years ago an MRI of my son's brain was normal. This past summer, two small lesions "consistent with lyme" per the report. I understand that lesions in this case refers to a difference in density - read inflammation.