LLMD visit update

[KaraM]

Hi,

 

I thought I'd post this here in addition to the Lyme Board, since we've been on the PANDAS board for so long and some things I thought were strep now look like they were Bartonella...see below. My bet, is, too, that if you experience PANDAS herxing when starting treatment, probiotice and detox ideas could help, too.

 

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 to CT. We follow up in 2 months.

 

I don't think Dr. H. is very experience with PANDAS...she was not familiar with the Cunningham test (but did want to see the article that comes with the test results so she could familiarize herself with it). So my bet is that she would be very open to exploring it and learning about it if you are looking for someone in the Boston area who is, at a minimum, not a skeptic.

 

In the meantime, on a slightly different note, 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

[kimballot]

Kara - thank you so much for sharing this. It was very helpful for me to read. Best wishes to you and your daughter!

[adkmom]

Hi,

 

I thought I'd post this here in addition to the Lyme Board, since we've been on the PANDAS board for so long and some things I thought were strep now look like they were Bartonella...see below. My bet, is, too, that if you experience PANDAS herxing when starting treatment, probiotice and detox ideas could help, too.

 

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 to CT. We follow up in 2 months.

 

I don't think Dr. H. is very experience with PANDAS...she was not familiar with the Cunningham test (but did want to see the article that comes with the test results so she could familiarize herself with it). So my bet is that she would be very open to exploring it and learning about it if you are looking for someone in the Boston area who is, at a minimum, not a skeptic.

 

In the meantime, on a slightly different note, 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.

 

Kara,

 

Thanks for all the info. Glad things went well. Definetly want to try some of your doc's suggestions.

 

darlene

[Doug]

so what does the small strech marks on the rash mean?

Thanks,

Tracie

[KaraM]

From what I understand, they are characteristic of the Bartonella bacteria that is carried in some ticks. Apparently cats can carry it, too (cat scratch fever). EAmom posted a link to an article on the cat in another post.

 

Here is a link with photos of different rashes. There are three pictures: one for Lyme, one for Bartonella, one for other tick borne illnesses. If you click on any of them it will bring you to several more pictures for that particular category.

 

http://www.lymediseaseassociation.org/index.php?option=com_phocagallery&view=category&id=11:rashes&Itemid=331

 

If you would like to see my dd's picture, PM me with your email. (You can't really see her face...it's pretty anonymous).

 

Kara

Edited April 8, 2011 by KaraM

[Malke]

From what I understand, they are characteristic of the Bartonella bacteria that is carried in some ticks. Apparently cats can carry it, too (cat scratch fever). EAmom posted a link to an article on the cat in another post.

 

Here is a link with photos of different rashes. There are three pictures: one for Lyme, one for Bartonella, one for other tick borne illnesses. If you click on any of them it will bring you to several more pictures for that particular category.

 

http://www.lymediseaseassociation.org/index.php?option=com_phocagallery&view=category&id=11:rashes&Itemid=331

 

If you would like to see my dd's picture, PM me with your email. (You can't really see her face...it's pretty anonymous).

 

Kara

 

How long did your daughter's rash last? Did the same type of rash come and go over a certain period of time?

 

Thanks.

[KaraM]

It was a about 4 years ago, so I can't remember exactly. But I don't think it was there for more than a few days. She has had no other rashes since.

 

 

How long did your daughter's rash last? Did the same type of rash come and go over a certain period of time?

 

Thanks.