NEED SUGGESTIONS

[Wilma Jenks]

My child has:

 

Clostridia-not sure what kind.

Cunningham test a 166, which suggests PANDAS I was told.

Ammonia is high.

Band 41 is positive.

 

One doctor said treat with vincomycen first for clostridia and do igenix test to see if there is lymes too.

 

Another doctor said to treat with injections(i think antibiotics) at the same time as doing the vincomycen for PANDAS.

 

Others have said do one thing at a time to see what works and what does not.

 

Can someone give me some advice?

[butterflymom]

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Edited February 2, 2016 by tampicc

[Wilma Jenks]

Thanks. I am starting vincomycen as soon as it arrives in the mail. I appreciate everyone's help.

[Phasmid]

Wilma, I'm sorry you are so torn. About the other "infections" -

 

You cannot assume probable Lyme Disease based on a positive band 41. This band commonly shows up. It doesn't indicate Borrelia species, but rather any flagellated bacterium. Yes, Borellia is flagellated (which makes the cell motile), but so are many other common bacteria. Do you have reason to believe your child could be infected by Borellia or other co-occuring bacterium? If your child has Clostridium difficile, she definitely needs treatment and if your provider is suggesting vancomycin oral, then that is a good place to start. Is he talking about IV vancomycin? That is another issue, as that has greater risk. IF I WERE YOU, I would do the oral vancomycin and see how she does. You will know VERY QUICKLY if that is what is causing the problem.

[peglem]

I agree, start w/ the clostridia treatment, then see what you have left to fight after that. I've done the throw-everything-you've-got-at-it approach and it gets really confusing. Its so hard when you're in crisis/desperation mode, but maybe the vanco treatment will surprise you and you'll see great improvement with just that. It would be wonderful if this was all straight forward and we could tell you exactly what to do. One of the crappy things about this disorder is that often we have to "play doctor" and just try what makes the most sense to us.

[LNN]

For those who have treated clostridia - did you experience any "worse before better" or die off/herx reaction at the start of treatment? If so, maybe Wilma should be prepared for a 4-5 day worsening and have some charcoal on hand. Maybe this isn't an issue - I don't have any experience. Just wanted to raise the question.

[Wilma Jenks]

I have the charcoal. I was told that is clostridia, but not Clostridium difficile. OK, i will post back after i get started on vanco. thanks for helping. i was going in circles when i was told about ivig and plasma exchange.