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Posted 5/22/2014 6:31 PM (GMT 0)
Briefly I will explain our story.

My son is 11 and has been fighting this illness or Pandas/Pans or both for two years now.  Got positive Igenex WB last Novemeber and started treatment in February of this year.

So far he did 3 months of doxy and biaxin, then we stopped for a month and now he has been on minocycline and biaxin for two weeks.  Also added in rsvertatrol, B12, and multi vitamin to help the deficiencies he has.

My question is how or what or when do you see any changes?  He is still showing all the same neurological symptoms, severe anxiety, brain fog... and now he is having more physical symptoms like joint pain, all over fatigue and soreness.  How long do we keep doing this, how do we know if it is helping?  He has lost the last two years of his life because of this.  He can barely do his school work, has not been to school for over a year now.

We are seeing LLMD and he has been successful in the past with patients, he himself had lyme 20 years ago, I just don't know anything anymore.   

Posted 5/22/2014 6:56 PM (GMT 0)
Sorry to hear your son is going through this, that has got to be pretty tough.

Do you know if your llmd is integrative?

A big part of healing from lyme is being able to get the toxins out so if there is a genetic issue like a MTHFR mutation, or mutation in detox pathyways it might take the correct supplements to really be able to heal. It might be worth consulting a nutritionist/herbalist to work with the lyme dr. They are pretty affordable and help a lot.
Posted 5/22/2014 7:13 PM (GMT 0)
He has been tested for the MTHFR and everything was normal.

I have him doing epsom salt soaks and drinking lemon water everyday. 

Should I add a detox like Milk Thistle or something?

 

Posted 5/22/2014 7:31 PM (GMT 0)
Regarding "...neurological symptoms, severe anxiety, brain fog... and now he is having more physical symptoms like joint pain, all over fatigue and soreness."

These sx sound also like yeast/fungus/mold sensitivity or overload symptoms. You might want to check w/ your LLMD about an anti fungal (although this also seems to be a speciality that many don't understand). If you do start targeting more "stuff to eliminate", his detox program might need a boost, too.

-p
Posted 5/22/2014 7:34 PM (GMT 0)
Milk thistle wouldn't be a bad idea. Not sure about with that with his age though, maybe a dandelion detox tea with some honey would be good. You can just pick that up at a grocery store.

Whew! That is good that he tested normal. Reservatrol is good. If he is having a lot of the body aches I might suggest adding in something like turmeric that is a gentle but effective anti-inflammatory. Are you using reservatrol isolated from grapes? I really like the straight up powder form of japanese knotweed but it might not be do-able for a kid because it is quite bitter.

I'm hoping someone that has more experience w/ kids with lyme sees this thread and can chime in here. I usually tell people if after a few months they don't see improvement, it is time to probably change things around.
Posted 5/22/2014 8:22 PM (GMT 0)
Skip the turmeric, I give my son 300 mg twice a day of curcumin. It comes in capsules, my son was 11 when diagnosed and that was the dose his LLMD said to give. It's the active ingredient in turmeric that reduces inflammation, that way your son doesn't have to eat a bunch of turmeric.

My son turned 12 may 16th. He's on ceftin twice daily and minocycline twice daily and AL complex. He's on three different probiotics, resveratrol, fish oil, vit d, r lipoic acid, niacin, and others I can't recall off the top of my lyme head! My son has a Mthfr mutation though. We do baths with Epsom salt and ginger, and he drinks lemon water. I am starting him on a liposomal glutathione paste too.
Posted 5/22/2014 8:36 PM (GMT 0)
Don't forget to give him a Multi Strain Probiotic - he'll need it with all those aggressive antibiotics.
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