Massachusetts LLMD visit update

[KaraM]

I brought my dd8 (65lbs) to see Dr. H. in Newton, MA yesterday and was very happy with how the visit went. Dr. H. was very warm, welcoming, down to earth and, most importantly, knowledgable. She listened very closely, reviewed the history I had put together and took lots of notes herself. She was very good with our dd, too…gentle, friendly and kind.

She confirmed that my dd had been exposed to Bartonella based on the Igenex results. Even though we don't' have the Western Blot back yet, she expects they will be positive. But she said that the medication protocol we are currently on (1 tsp Zithro/day and 1 tsp. Bactrim 2x/day prescribed by Dr. is good for both Lyme and Bartonella. So she wouldn't change anything even if they are positive. She said if my dd doesn't improve more soon, we could increase the Zithro (from 1 to 2 tsp/day).

 

I printed a few pictures of an unexplained rash my dd got in late spring 2007. Since our PANDAS diagnosis, I've always wondered whether it was a strep rash. After the Bartonella results, I've wondered if it might be a lyme rash. When Dr. H. looked at them, she noticed something I didn't see in the photo and that was some very faint stretch mark lines. So now I can clearly see them and think that this may have all started a few years ago…(Damn those pediatricians who just said it was viral.)

 

In addition to the abx, she recommended some other things or confirmed what we are doing is good:

 

Probiotics: Saccho B in the morning at the same time as abx is fine; Culturelle a few hours after evening dose.

 

Inositol: I started giving this knowing it could possibly help the OCD and it is for liver detox. She said this is good for anxiety and is very safe. She said we could go up as high as 5000mg/day.

 

Epsom Salt and Soda Bath

 

If things are really bad from a Herxing standpoint, she said Charcoal capsules (at least 2 hours away from meds) are a great absorber. Another absorption option she said we could try is "pectasol" made from the inside of the rinds of citrus fruit.

 

She also recommended we add fish oil and had a highly concentrated liquid available in her office from Pharmax. It has oil of orange in it for flavor. My dd had no problem taking about ¾ tsp. of it. 1tsp. has 750mg DHA and 1050 mg EPA, with total omega-3 of 2250mg. She said this could help with brain inflammation.

 

She said the treatment will probably take at least a year. She would want to see at least 2 months symptom free as well as lower Bartonella titers. Since my dd did so well over the summer, but has had a terrible winter, she said she would hesitate stopping treatment before the end of next winter regardless.

 

One last thing she said we could try if we wanted to is a homeopathic treatment for strep called San Strep. The way I understood it is that when strep bacteria die, the dead remains of the cells can hide in the tissue so there is no way to culture them out and the body's immune system doesn't know they are there. The San Strep binds to the cell wall deficient form of strep allowing the body to recognize them so the immune system can clear it. As I think about this more from a PANDAS standpoint, I'm not sure how I feel about it. Do I want my dd's immune system to recognize strep? I'm going to have to follow up with a question about this.

 

All in all, a good appointment. With traffic, it took us a litte more than 1 ½ hours. But only 45 minutes home. Much better than the 4 hours to CT. We follow up in 2 months.

 

In the meantime, I got a call late yesterday from Dr. J's office to schedule an appointment for both dd and ds. Because there are two, we can't get in until August. I asked the person calling me if they ever refer to Dr. H. and she said they do give her name out as a LLMD but can't say much more than that….

 

So I have the appointment with Dr. J. just in case. If I don't think it's necessary at a later date, I'll cancel.

 

Sorry for such a long post. I hope it's helpful to some.

Edited April 6, 2011 by KaraM

[momaine]

Kara,

Thank you so much for posting such a detailed over view of your visit with Dr. H. I'm looking forward to my visit on the 20th.

[LNN]

Kara,

So glad to hear it was a good appt! Must've been a big relief to hear all the things you were doing right! How is DD doing?

Laura

[KaraM]

Thanks for asking. I've hesitated saying anything for fear of jinxing us. I think she's doing better. She's slowed down on the handwashing, so swelling and bleeding has stopped. Even when things get contaminated, she seems to get over them more easily. And, she's starting to get over some long standing things. For example, the tub/entire 2nd floor bathroom has been off limits since her stomach bug in Feb. She took the detox bath last night!!

Monday was her first tantrum/emotional breakdown free day (following several days where there was usually one or two). Yesterday she did pretty well too, although she paniced when it was time to go get her hair cut. She says she's feeling better.

 

This morning we were talking about stopping her Bactrim while we are in Florida, since it will cause sun sensitivity. She said "NO WAY I'm stopping that medicine. It's helping me." So that's a good sign - on the flip side, she has pretty fair skin, so my guess is we'll end up with a little burn no matter how many precautions we take. My son, on the other hand, with skin that tans as soon as he steps out the door, was horrified that he may possible get a sunburn and said he would refuse the medicine. Glad he has his priorities straight.

 

Kara,

So glad to hear it was a good appt! Must've been a big relief to hear all the things you were doing right! How is DD doing?

Laura

[smartyjones]

since it will cause sun sensitivity. ."

 

 

i know you know b/c you've written it. . . but -- really watch the sun. i don't know if bactrim is the same as doxy, but i was on that a few years ago and got a couple sun burns even though i thought i was being cautious.

 

enjoy your time in FL!

[justinekno]

I am fair skinned so I tend to burn easily anyway but I can sunscreen up and be fine. BUT when I was on doxy last summer, it was as if I was a piece of bacon frying in the sun. Despite tons of sunscreen and a hat, my skin was stinging so bad I had to go inside after only a short time (1/2 hr). I ended up switching to tetracycline which was easier with the sun. Hopefully bactrim won't cause as much sun sensitivity for you.

 

since it will cause sun sensitivity. ."

 

 

i know you know b/c you've written it. . . but -- really watch the sun. i don't know if bactrim is the same as doxy, but i was on that a few years ago and got a couple sun burns even though i thought i was being cautious.

 

enjoy your time in FL!