posted
I'm not sure what section this topic belongs in, but....
Several of the panel members have private practices. Soon they will have been exposed to as much info as our best LLMD's.
Even if they are very conservative, they will have profound knowledge.
The chairperson is a pediatrician.....
Could it hurt - insurance/record wise - to see one?
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The purposely deaf and blind are useless when they choose to be regardless of how much good info they are provided. It was clear as day at the hearing how little they respected LLMDs and their viewpoints.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, the panel's biggest concern was whether a map showed tick infection rates, not tick prevalence. How about asking that moron Rheumatologist to better prove his ridiculous theory better of childhood emotional distress brought out after a tick bite? OMG. What about having Wormser, Shapiro, Steere, etc. have to say something more than regurgitating old data? That would be my doc? NO THANKS. I'll leave them for my worst enemies. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was thinking most about the pediatrician who is on the panel; Dr. Carol Baker, Texas Children's Hospital in Houston. We desperately need a local Pediatric LLMD for emergencies.
My daughter is doing very, very well on oral antibiotics. But if she misses 2 doses in a week - she starts to show symptoms again.
Her doc (the best doctor that ever lived, bless his heart !!) thinks it's going to be soonish - ? - that she'll be able to get off them altogether.
We have never had any success with a local pediatrician who would even talk about it. Her current local GP doesn't want to get in to it at all. (Nobody does)
I was just thinking of someone as a backup, someone local we could go to if anything serious ever happened.
In an emergency, we'd have to use a local and Texas Children's Hospital is the best in town. It's where we have always planned to go for any kind of "we need someone right now"
What is the worst that can happen? One more dismaying office visit..... or will they report me to the Gestapo and take me away in the middle of the night?
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have heard stories from a few here stating some IDSA docs would be willing to go far enough to try to get young children taken from parents who 'irresponsibly' treat young kids with unnecessary Abx.
They can be ruthless. I'd be frightened if my child had to have treatment against mainstream meds, but sadly it's reality.
That's worst case. I have no doubt it would be a bad visit. No doubt the IDSA doc would say your daughter is just having emotional issues...blah, blah, blah. They are PROGRAMMED to do so.
Tread carefully.....
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
seek - that makes my stomach churn and my heart flip flop....
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I ditto about Dr. Baker...wouldn't trust her so far as I could throw her (for the record...this would be like not at all!).
We are trying some alternative stuff for our kids right now...they have mild symptoms...son is the worst, but he's completely functional..OCD and fatigue mainly his symptoms.
Anyhow...he only had 41 and 39 show up on WB...so I can guarantee that if we do give him months of abx (and we may, just haven't started yet as we are trying some other things first) that if a doc got wind of it, they would demand that we stop because 'technically'...he doesn't have Lyme (no laboratory data to support it according to CDC).
Does your child have a CDC positive WB? If so...then you are much more protected than those of us whose children don't.
It would be nice though if some of those panelists would be able to have some Lyme patients first hand to see how destructive it can be and how resilient it is!
Take care,
Ocean
ps....we are homeschooling our son this year because I just think it will make things a heck of a lot easier for us during the treatment process...and I don't want to have to worry about anything...it's a shame that parents have been subjected to such treatment due to abx treatment while there are women doing all kinds of illegal drugs while pregnant and CPS does nothing.
posted
She is CDC positive - still. Her other co-infection test results have all gone from sky high to nothing within the past year.
I used to see Dr.B (bless him as well !) and he said to screen everyone in the house with the full Igenex panel - for the humans ! That was 4 yrs ago and she had way high titers and very few symptoms.
***1st dog no exposure, 2nd dog small past exposure with no current infection, my husband's was all blank - but his immune system tests were all at zero. He did IVIG and avoided taking another test until last week. (He looks like me in the year before I "collapsed") We'll see how it comes out....
3 1/2 years ago we took her to Dr J just to get an opinion and he said not to treat. He did say that he thought it was a new infection and that her immune system was really working.
It wasn't until a year ago that clear symptoms showed up, we started oral treatment, and everything is fine.
Babesia titre has gone from the highest to the lowest, same with Erlichia and Bartonella. Only her Lyme remains positive.
Because her immune system is actually functioning and "healthy", her blood work reflects it. Dr J just changed her meds and thinks that's going to do it.
We were whining because we thought that after 12 months she wouldn't need abx anymore more. He chuckled and said "it takes longer than that, she's 'fix-able' and nearly there"
ie: quit worrying folks, you don't have a problem, she's fine and will be fine.
He is so good at handling freaked out parents. Which is definitely us - the prospect of her having any of what I have had in the past 9 years really haunts us.
I guess that's why I thought any local ped md would be good - when it comes to her we plan ahead and consider all posibilities.
Every time we are in Dr J's office we see what can happen if you don't have a heads-up like we did. I always have a strange mix of guilt, relief, anxiety and flat out broken heart.
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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posted
Sorry the above was so long - what Ocean, Amanda and Seekhelp said above has made me really nervous and confirms my worst fears
Years ago I would have said "there is no way that can happen" but now I know better.
I'd take a risk for myself but there is no way I'm putting my daughter in the middle of anything like what you describe. I don't want to believe such things could ever take place in this country...
Our doc described the latest 3 cases against him - I mentioned the one about the mother being accused of Munchausen by Proxy. He shook his head and said it was ridiculous, the lady is no such thing.
He said her ex-husband is trying to getting out of payment and the Munchausen thing is his accusation. Also said the guy was default on child support going back years
BTW, he also said that he had a great time at the UOS talk thing with Andy & Co. and that it lasted until midnight.
Also said he's only $100,000 in debt to his law firm - a big improvement. The law firm does not run tabs ever
He's worried because now his lawyer knows as much about the diseases as he does. I got the impression that the partners of the firm are very anxious.
(We always donate and they have a PayPal thing now too that I have used)
Well, this has really opened the flood gates for me - sorry for all the rambling!
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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