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Saw Dr. Jones yesterday.


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He said he does not think she has P.A.N.D.A.S He said she had no indication on her tests pointing towards it. I told him that I have heard that kids can have PANDAS without these possitive tests. Anyway...he thinks it's all bartonella. He added biaxin to the bactrim. He was very interested in why the bactrim was helping to get her to sleep, since the bartonella is not helping unless the 2 Abx. are given at the same time. I do see the bactrim helping with her severe OCD and insomnia at night, and her VERY odd hallucinations. What would the bactrim be helping, if he does not think she has PANDAS, and if he thinks it could not be helping the bartonella by itself????

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He said he does not think she has P.A.N.D.A.S He said she had no indication on her tests pointing towards it. I told him that I have heard that kids can have PANDAS without these possitive tests. Anyway...he thinks it's all bartonella. He added biaxin to the bactrim. He was very interested in why the bactrim was helping to get her to sleep, since the bartonella is not helping unless the 2 Abx. are given at the same time. I do see the bactrim helping with her severe OCD and insomnia at night, and her VERY odd hallucinations. What would the bactrim be helping, if he does not think she has PANDAS, and if he thinks it could not be helping the bartonella by itself????

 

Glad you got in to see Dr. J! As for why the Bactrim is helping by itself? I think everyone's body is different. We saw improvement in the beginning with Rifampin alone. Maybe he's just never seen this before - doesn't mean its not possible.

 

Did you talk to him about your suspicion that you have Lyme too? Keep us posted on how the Bactrim/Biaxin combo works for her. Remember, she may herx, so be prepared - temporary worsening is sometimes a good sign when you add a new antibiotic. And it doesn't last forever.

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Remember, she may herx, so be prepared - temporary worsening is sometimes a good sign when you add a new antibiotic. And it doesn't last forever.

But sometimes it seems like it last forever, so be prepared! You are in good hands with Dr. J. Does your dd have autoimmune markers that are elevated?

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http://www.theday.com/article/20110614/NWS12/306149905/-1/nws

 

 

Thought you might be interested in reading that.

 

 

Basically he helped a family who was desperate. How many of us PANDAS/Lyme Moms so long for that when we can't find the help we need - especially locally. I also would suggest reading "Cure Unknown" as it talks about this case and gives good insight into Dr. J and who he is. The documentary "Under Our Skin" also addresses this.

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http://www.theday.com/article/20110614/NWS12/306149905/-1/nws

 

 

Thought you might be interested in reading that.

 

 

Basically he helped a family who was desperate. How many of us PANDAS/Lyme Moms so long for that when we can't find the help we need - especially locally. I also would suggest reading "Cure Unknown" as it talks about this case and gives good insight into Dr. J and who he is. The documentary "Under Our Skin" also addresses this.

 

Before Wilma mentioned something about legal action and doctor jones which is the only reason why I posted the article. In order to answer a question that she previously asked......She asked a question about legal action. I found an article on legal action against it and posted it. Period.

 

Yes, I think that was very helpful for you to provide this info for Wilma. Although i just skimmed the articles I think the article was factual and informational. But I also think it is important to know the situation of the family he helped - the bigger picture.

 

Here is a link to a chapter from Cure unknown but unfortunately one of the pages (p 332) that really describes what is happening with the family he helped with the treatment under question is missing.

 

http://books.google.com/books?id=n8_3VeO07sgC&pg=PA330&lpg=PA330&dq=Dr.+jones+cure+unknown&source=bl&ots=U5D3_HGisi&sig=RYCUamTKvj7rovNr3cT-dhHsvEQ&hl=en&ei=06X3TaPtDpGp0AGWod3CCw&sa=X&oi=book_result&ct=result&resnum=1&ved=0CBwQ6AEwAA#v=onepage&q&f=false

 

I am sure that most PANDAS and Lyme parents would be grateful to get the help they need like this family did. This Dr is mentioned throughout in other parts of the book and further insight into him can be achieved from reading it.

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Just wanted to say....that I was not trying to be disrespectful to Dr. Jones. I happen to think he is wonderful for what he is doing. I was just curious about what the law suit was about. Actually, I am glad I asked, so that I could hear evereyone "sing his praises." Really did not mean to stir up trouble. Not my intention at all.

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Just wanted to say....that I was not trying to be disrespectful to Dr. Jones. I happen to think he is wonderful for what he is doing. I was just curious about what the law suit was about. Actually, I am glad I asked, so that I could hear evereyone "sing his praises." Really did not mean to stir up trouble. Not my intention at all.

Wilma- You were not being disrespectful. It's good to ask questions - don't stop - it's how we move forward. Your a great Mom...can't wear to hear of your daughter's progress ;) .

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Just wanted to say....that I was not trying to be disrespectful to Dr. Jones. I happen to think he is wonderful for what he is doing. I was just curious about what the law suit was about. Actually, I am glad I asked, so that I could hear everyone "sing his praises." Really did not mean to stir up trouble. Not my intention at all.

Wilma- You were not being disrespectful. It's good to ask questions - don't stop - it's how we move forward. Your a great Mom...can't wear to hear of your daughter's progress ;)

 

I agree I don't think you were being disrespectful either. I have never even met Dr J but I felt like I got to know his character through the book I mentioned and other's experiences. I realized how much he has a great intuition about these sick kids and what to do for them and practices the "art" of medicine rather than just blindly following some protocol that doesn't fit and doesn't make sense - what most kids with such unique challenges on this forum and the PANDAS forum need but don't often get. I joined the ACN forum thinking PANDAS. Back then people were debating Lyme and talking about the action against Dr. J. That was before I knew much about Lyme and it confused me. I do remember thinking negative of Dr J back then because there was an action against him but I didn't understand. Now I get it! So, I thought the background was important to anyone reading this.

 

I have been following your story, tried to PM you a couple of times a while back when your box was full and I am really glad that you have a direction to follow. I think the diagnosis of Bartonella makes sense for the symptoms you describe. (I have been researching it a lot since we think Aidan has it.) I can relate to your situation as my child has always been a huge challenge in some interesting ways - we are thinking congenital Bartonella and Lyme. I am glad to hear that you are getting some positive results!

 

I think you are amazing how you are going to the ends of the earth to help your child. Hang in there!!

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I already read both books. All I was doing was answering a question someone asked. No need to be so defensive. I wasn't disrespectful. The article doesn't reflect my personal opinion. It simply answered a question concerning legal action. The fact that the article states something which you disagree with on a personal level is beyond my control. I didn't write it.

 

 

I feel the need to apologize as I did not notice that this article was dated this week (thats what happens when you skim something). I did not realize how current it was so it is really good that it was posted since it appears to be current and it is an update on Dr. Jones ongoing legal saga as I think anyone on either side of the Lyme debate might be interested in. I also don't want this thread to turn into a debate between you and I as that was not the purpose of my post. If I am being defensive it is of Dr J and of the other doctors who take a step out of the box to help us - not myself. Wilma is finally getting the help for her child that she needs.

 

I also not aiming my comments at you in particular but at all the people reading this forum who may not have read the book including/especially Wilma and also anyone who is new here not familiar to the controversy regarding Lyme. As I stated when I was new here I had a different impression of Dr. J then I do now.

 

There is nothing in the article I disagree with - it seems to be factual talking about the controversy and the legal battle.

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Not sure. What test would that have been on?

Wilma,

I'm no expert but I think an elevated C3d shows that an autoimmune process may be going on. I know my dd had other test too that the doctor thought indicated autoimmunity (well, the cunningham test too, I think) as well, but I'm not sure off the top of my head what they were.

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