LLMD monthly visit update

[sptcmom]

Ok, our LLMD wants monthly followups for DS so we paid her a revisit a week or so ago. Following are important points to look at:

1 Strep exposure twice with ramp up of motor tics and ocd around Thanksgiving. Was still going on on Dec 9th when we saw our LLMD.

2 Test results back- ESR down, Liver enzymes normal,ferritin normal (yay!). Fry labs found several kinds of biofilms with organisms but the photo shows some natural killer cells, very few, below normal but atleast they're there, a second photo shows Bartonella organisms attached to DS's cells- GROSS! but sadly true. ASO was up to 161 which is pretty high for DS because his basic capacity for making antibodies to strep is poor.

3 Another test was the Detoxigenomic profile. Well, DS is doing ok with phase -1 detox but has two genetic mutations in his liver detox phase-2 pathway.

4 We added Glutathione cream, Parsley, Burbur, Zith 250 QD (which I later increased to 250 BID at my discretion and our PANDAS doc agreed). Eat more vegetables like cauliflower, brussells sprouts, cabbage etc for helping the liver detox pathway)

5 Discontinued Augmentin and Biaxin for now.

Rest all unchanged. No further testing except the monthly metabolic panel bloodwork. I added ASO to that just to check thruout the winter.

So Ds was doing better on the Zith and two days ago had yet another Strep exposure at school (assembly in school with 3rd, 4th and 5th graders all present). I kept him at home yesterday and he's ramped up once again.The change over to Zith was very timely thank God.

Pandas doc wants to do T&A for DS. Not in any hurry but wants us to consider strongly. I am researching at present. Will ask our LLMD at next month's visit.

Jodie

Edited December 18, 2010 by sptcmom

[sf_mom]

Jodie,

 

As always it seems like you had a wonderful appointment and I definitely feel more regularly scheduled appointments are invaluable on the front end of treatment. We are in front of our Dr. every six weeks.

 

I also wanted to add that we opted against T & A for the following reasons:

 

1. It is a valuable 'future' filter for potential infecting agents

 

2. There is no guarantee the strep actually resides in tonsils

 

3. We felt the strep would resolve with proper treatment. It has and at last check his titers were sub negative ASO: 90 Anti-DNase-B: 60

 

4. Potential of relapse due to surgery

 

5. Dr. K originally told us it wasn't necessary

 

We are also lucky that our older son is no longer responsive to strep (at least that I am aware of currently) like he was last year. I also wanted to add that I've started herbs for Bartonella provocation testing and I am definitely feeling ill/herx from the herbs (day 4 and only up to 10 drops in a.m. and p.m.) I haven't even started the A Bart which is suppose to be even more powerful for Bartonella.

 

Older DS also had a change in protocol 8 days ago and added Olive Leaf Extract with Bartonella herbs and we have also seen a rise in symptoms: mood liability, just not feeling well comments, appearance of bartonella like rash on his neck (got photos for the Dr.) and reemergence of TICs (3 times only and has stopped 'I think'). We are waiting for things to settle again before we move forward with additional antibiotic.

 

Is it possible that you are seeing more of a response due to recent change in protocol verses exposure now?

Edited December 18, 2010 by SF Mom

[sptcmom]

Jodie,

 

As always it seems like you had a wonderful appointment and I definitely feel more regularly scheduled appointments are invaluable on the front end of treatment. We are in front of our Dr. every six weeks.

 

I also wanted to add that we opted against T & A for the following reasons:

 

1. It is a valuable 'future' filter for potential infecting agents

 

2. There is no guarantee the strep actually resides in tonsils

 

3. We felt the strep would resolve with proper treatment. It has and at last check his titers were sub negative ASO: 90 Anti-DNase-B: 60

 

4. Potential of relapse due to surgery

 

5. Dr. K originally told us it wasn't necessary

 

We are also lucky that our older son is no longer responsive to strep (at least that I am aware of currently) like he was last year. I also wanted to add that I've started herbs for Bartonella provocation testing and I am definitely feeling ill/herx from the herbs (day 4 and only up to 10 drops in a.m. and p.m.) I haven't even started the A Bart which is suppose to be even more powerful for Bartonella.

 

Older DS also had a change in protocol 8 days ago and added Olive Leaf Extract with Bartonella herbs and we have also seen a rise in symptoms: mood liability, just not feeling well comments, appearance of bartonella like rash on his neck (got photos for the Dr.) and reemergence of TICs (3 times only and has stopped 'I think'). We are waiting for things to settle again before we move forward with additional antibiotic.

 

Is it possible that you are seeing more of a response due to recent change in protocol verses exposure now?

 

I think its probably both. Adding the Zith yes, and also immediately after being exposed to a gym full of students and a few of them have strep as per the school nurse. The ramp up has been resolving but the exhaustion is pretty bad so I know he's herxing.

Which herbs are you using for Bartonella? Resveratrol has been one I've been looking at. My llmd started me on zith but haven't done any testing yet due to financial reasons. January I'll be ready for Igenex etc and thats when my next appt is anyways. So looking forward to herxing and healing!Been reading the Lyme Herbs book by Stephen Buhner. Also wanted to wait till after my ART trainig so I can better tailor the protocol to my body.

 

You guys are going thru some intense stuff. If you ever want to get away from it all bring the family over to NJ and enjoy the snow!

Dr K told us not to do T&A too but that was way back.

jodie

[sf_mom]

The Bartonella Herbs are from Healthy Directions, Inc and its called BAR-1. It's got Cat's Claw, Jamaican Sarsaparillo, Pau d'Arco, Burdock, Blessed Thistle, Mullein, Oregon Grape in it. I start the A Bart once it arrives.

 

Its funny how Dr. K's words still ring in my head 'you do not need to do a T & A'. The study does not prove its effectiveness.

 

Anyway, its a personal choice but we are avoiding any unnecessary surgeries/procedures including dental cleanings 'for now'. DH and I have a disagreement about the dental cleanings.

 

-Wendy