Dr. Jones - Cool guy!

[laure]

Just returned from our first visit with Dr. Jones. Wonderful man. He does not seem 82!!!!! Undivided attention for nearly 2 hours. He knew everything about her before we arrived, memorized her story apparently. We had to offer to leave his office, he just kept telling stories of successes and asking/answering questions. Great way with kids. The best part was, during our visit he called Dr. B. , and when he got him on the line, he put it on speaker phone. They both discussed our daughter's health with us listening! Latest blood tests faxed from Dr. B's office indicated high anti Dnase B titers (993) and high ASO titers 270. These have both gone up since Sept when she began abx, strangely. Dr. J suspects Bartonella in addition to the positive lyme, so he added Bactrim. So she is now being treated for both pandas and lyme...Augmentin, Zithromax, Bactrim, and Tindamax on weekends. Ran tests right there in the office (after emla cream) for cunningham and Igenex (second time) and urinalysis. Pretty convenient, and the lab techs and staff are awesome! Everyone relaxed and wearing jeans, Dr. J in a jogging suit. DD10 had immediate herx by the time we arrived home (6 hours after taking the bactrim) which we have seen before. So can't touch her, she can't put shoes on, showered for about 30 minutes, cried for an hour, can't touch handles, pets, etc. etc. Crazy! But herxing is a good thing, as we know, and this is only the second time she has ever had one in 7 months, so we are feeling positive.

[philamom]

Glad to hear your appointment went well, laure!

[adkmom]

Just returned from our first visit with Dr. Jones. Wonderful man. He does not seem 82!!!!! Undivided attention for nearly 2 hours. He knew everything about her before we arrived, memorized her story apparently. We had to offer to leave his office, he just kept telling stories of successes and asking/answering questions. Great way with kids. The best part was, during our visit he called Dr. B. , and when he got him on the line, he put it on speaker phone. They both discussed our daughter's health with us listening! Latest blood tests faxed from Dr. B's office indicated high anti Dnase B titers (993) and high ASO titers 270. These have both gone up since Sept when she began abx, strangely. Dr. J suspects Bartonella in addition to the positive lyme, so he added Bactrim. So she is now being treated for both pandas and lyme...Augmentin, Zithromax, Bactrim, and Tindamax on weekends. Ran tests right there in the office (after emla cream) for cunningham and Igenex (second time) and urinalysis. Pretty convenient, and the lab techs and staff are awesome! Everyone relaxed and wearing jeans, Dr. J in a jogging suit. DD10 had immediate herx by the time we arrived home (6 hours after taking the bactrim) which we have seen before. So can't touch her, she can't put shoes on, showered for about 30 minutes, cried for an hour, can't touch handles, pets, etc. etc. Crazy! But herxing is a good thing, as we know, and this is only the second time she has ever had one in 7 months, so we are feeling positive.

 

Laura,

 

I sent you a PM. So glad to hear it went well. I've been thinking about you. Wasn't sure if you took that appt. So happy for you!!

[adkmom]

Does he give any timeframe for treatment or improvement in all of this?

[momaine]

I love Dr. Jones! I wanted to let you know before you are in the middle of a terrible herx that you feel like you can't handle, that his office thinks its a good idea to use natural things to help with the herxing but they don't make suggestions as to what they are. One of the office workers did suggest we see a Naturopath to help with that. I've learned a lot on the forum, but I think I am going to take dd to a Naturopath to make sure I'm not mixing things that shouldn't be mixed or giving them at innapropriate times.

 

My dd improved the first month and really struggled with herxing the second month of treatment. We stopped all antibiotics for two days at one point to make sure it was herxing and to give her body a break. She improved tremendously with the break so we felt confident it was a herx and now with the supplements we are using, she is improving again.

 

I would make the strong suggestion that you learn all you can about helping detoxify the body to prevent herxing. I wish I felt knowledgable to give you information, but I don't. I did read "The Lyme Disease Solition" which has many ideas of which we have used some.

[laure]

I love Dr. Jones! I wanted to let you know before you are in the middle of a terrible herx that you feel like you can't handle, that his office thinks its a good idea to use natural things to help with the herxing but they don't make suggestions as to what they are. One of the office workers did suggest we see a Naturopath to help with that. I've learned a lot on the forum, but I think I am going to take dd to a Naturopath to make sure I'm not mixing things that shouldn't be mixed or giving them at innapropriate times.

 

My dd improved the first month and really struggled with herxing the second month of treatment. We stopped all antibiotics for two days at one point to make sure it was herxing and to give her body a break. She improved tremendously with the break so we felt confident it was a herx and now with the supplements we are using, she is improving again.

 

I would make the strong suggestion that you learn all you can about helping detoxify the body to prevent herxing. I wish I felt knowledgable to give you information, but I don't. I did read "The Lyme Disease Solition" which has many ideas of which we have used some.

 

 

Thanks for that feedback Momaine! We are using 10 bentonite clays a day, but like you, I am unsure about other detox methods...almost too much info out there, and I am not a quick study. Anyone else comment on olive leaf extract or milk thistle? I have purchased both, but am afraid to add them right now. By the way, two advil worked great last night, she calmed down enough to get to sleep and went off to school today, so I've bought another 6 hours...

[sf_mom]

Great news!!!!!! So glad you liked Dr. Jones and happy that they are addressing Bartonella for your DD. We've also noticed herx's that start within hours of rotation. As you know, worse is better and hopefully the increase in symptoms is short lived and she is on a path to improvement again soon.

 

The 10 Bentonite pills is fantastic as a daily detox = 1/2 cup of liquid clay. Bentonite acts like a sponge and takes the toxin's from liver bile and helps the body to eliminate them. You can also add BurBur which will help detox organs. We used 15 drops in juice both a.m./p.m. Water would probably be better but we would never get our twins to take it otherwise....

 

http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=13

 

I look forward to hearing further reports of improvement. I also understand Bartonella typically takes a good 6 months to treat. Look for those rashes to appear.

 

-Wendy

Edited April 1, 2011 by SF Mom

[philamom]

Great news!!!!!! So glad you liked Dr. Jones and happy that they are addressing Bartonella for your DD. We've also noticed herx's that start within hours of rotation. As you know, worse is better and hopefully the increase in symptoms is short lived and she is on a path to improvement again soon.

 

The 10 Bentonite pills is fantastic as a daily detox = 1/2 cup of liquid clay. Bentonite acts like a sponge and takes the toxin's from liver bile and helps the body to eliminate them. You can also add BurBur which will help detox organs. We used 15 drops in juice both a.m./p.m. Water would probably be better but we would never get our twins to take it otherwise....

 

http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=13

 

I look forward to hearing further reports of improvement. I also understand Bartonella typically takes a good 6 months to treat. Look for those rashes to appear.

 

-Wendy

I mix the Burbur in "Hint" naturally flvaored blackberry water (1 ounce). On days she's giving me a hard time, I mix it with Vitamin Water.

 

Are the Bentonite capsules on the larger size? Anyone?

[sf_mom]

Good idea on the water!!!!

 

Yes bentonite pills that our nutritionist sells is unfortunately on larger size. I noticed recently Iherb carries some... perhaps smaller.

 

-Wendy

[sf_mom]

I also wanted to add that we use Olive Leaf Extract as an anti-viral protocol. Our older son takes 1,800 m.g. per day... 4 pills. I would not start them until things settle from this particular rotation of antibiotics. We did noticed a 10 day herx when we started.

 

-Wendy

[pixiesmommy]

I have read time and again on the PANDAS board that olive leaf should not be taken w/abx, but I haven't done research as to why... perhaps they counteract or detox one another?

 

Milk thistle is support/detox for the liver and can be taken with anything.

[KaraM]

I also understand Bartonella typically takes a good 6 months to treat. Look for those rashes to appear.

 

-Wendy

 

Wendy - when you say look for the rashes...are you saying that we might see a Bartonella rash appear after we've started Bartonella treatment (we started Bactrim and Zithro combo on Monday)? Do you mean the "stretch mark" rash or any type of rash? I get a little nervous about rashes, since my dd8 is allergic to amoxicillan. I know Bactrim is not in the same family, but get nervous nonetheless...

 

Would the rash be itchy? This morning, she was saying the back of her leg was itchy and felt something like a bug bite. There was a very small bite like lump. I don't think it's anything signficiant, but plan on checking later to see if it has turned into anything else.

 

Thanks for your help.

 

Kara

[philamom]

I have read time and again on the PANDAS board that olive leaf should not be taken w/abx, but I haven't done research as to why... perhaps they counteract or detox one another?

 

Milk thistle is support/detox for the liver and can be taken with anything.

drugstore.com

Are there any interactions with Milk thistle?

Currently, the only known drug interaction with milk thistle is metronidazole (Flagyl).

 

I also read on the canlyme website that it should not be taken with flagyl, because it may diminish the effectiveness of the antibiotic. With that said, it seems many llmd's are saying it's ok to be taken with tindamax (same line as flagyl). I may consider it for my daughter's constant elevated LFT's. I need to run it by her doctor.

[LNN]

Milk thistle is support/detox for the liver and can be taken with anything.

drugstore.com

Are there any interactions with Milk thistle?

Currently, the only known drug interaction with milk thistle is metronidazole (Flagyl).

 

Check the milk thistle thread - I posted an article that lists other meds effected by milk thistle. MT by itself seems to have few side effects, but apparently can change the rate at which other meds are metabolized, causing either too little or too much of a med to stay in your system beyond the normally expected half-life. Flagyl is listed, yet my LLMD said it's ok to take with tindamax. So I would definitely run plans by your doctor.

[philamom]

Milk thistle is support/detox for the liver and can be taken with anything.

drugstore.com

Are there any interactions with Milk thistle?

Currently, the only known drug interaction with milk thistle is metronidazole (Flagyl).

 

Check the milk thistle thread - I posted an article that lists other meds effected by milk thistle. MT by itself seems to have few side effects, but apparently can change the rate at which other meds are metabolized, causing either too little or too much of a med to stay in your system beyond the normally expected half-life. Flagyl is listed, yet my LLMD said it's ok to take with tindamax. So I would definitely run plans by your doctor.

Thanks!