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IVIG update along with abx/yeast & other issues


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Peggy,

Have you tried monolaurin? It has anti viral and anti bacterial properties. I had great success when I used it with my daughter.

Colleen

 

No, I have never heard of it. I googled it quick and saw it's natural antiviral derived from coconut oil? I will try to find more research on this. What source do you use, is this something you can get at whole foods? Thank in advance for any info you have. Thank you for posting this - I appreciate it!

Peggy

 

monolaurin is sold through new beginnings, but you can also get a brand name called lauracidine which is more expensive, although I don't know why anyone would. You can check out their website though because its pretty informative. We ordered the monolaurin the begining of this week - can't wait for it to get here.

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just received an e-mail from Dr. K yesterday which I thought I would copy & paste an excerpt that might be interesting to some of you - here goes:

 

PITAND as such (and as originally described) likely DOES NOT EXIST. More likely it's the "classic" PANDAS syndrome that is negative for GABS. To explain it a bit: once an autoimmune process is fully developed, ANY infective agent (bacteria other than GABS, viruses, Immunizations, etc.) can cause symptoms' recurrence. The reason for this is that (this is the newest information, that was not available at the time Gaby received her treatment) autoimmune reaction causes DEPOSITS of antibody-antigen complexes in the walls of parenchymal blood vessels of the brain (in PANDAS, blood vessels of the basal ganglia region!). These deposits ALTER the permeability of blood-brain barrier, thus allowing OTHER agents AND toxins to enter the basal ganglia and cause the damage.

 

 

Thanks so much for posting this. It is very interesting! Did Dr K explain the mechanism in which IVIG would address the altered permeability of the blood-brain barrier?

 

 

I'll paste here what he said - but it doesn't really go into detail about the mechanism:

Yes, IVIG and plasmapheresis are the ONLY known treatment that would affect these deposits and reverse the process. The only lingering question in my mind regarding Gaby is the following: was there MORE AA complexes (and likely MORE damage) there then is usually anticipated and was (possibly) the IVIG dose (1.5 g/kg) too low to take care of it completely.

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I was wondering if anyone has any thoughts on whether our children are more susceptible to diseases such as meningitis b/c their blood- brain barrier is already altered? I always understood that the strep antibodies attacked the basal ganglia, deep in the brain, but I did not grasp until now that it is b/c that barrier is actually altered. I find that very scary.

Colleen

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Wow, just caught the last couple posts here....In regards to what Dr K said about an autoimmune disorder being "fully developed". Can anyone tell me how you know when it gets to that point? Are you already there if symptoms are appearing? If anyone happends to know...

 

I believe that it does refer to the time when major symptoms start appearing because that's when you know that damage has already occurred to the basal ganglia.

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Well, Gaby had her last dose of diflucan yesterday and for the whole day she did not utter one of the repetitive phrases that she had been doing for the last 10 days or so. It looks like the yeast and the yeast-die off is under control. However, it's always something. Her twin came home from school with stomach flu on Friday (nausea/stomach ache - lasted 1 or 2 days). Now poor Gaby woke up in the middle of the night complaining of severe stomach cramps - started vomiting at 6AM and has been continuing with this all morning (just bile now).

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