philamom

There is a great GI doctor who knows a lot about lyme. He is located in North New Jersey. I will pm his info. You might want to at least read the artices he published.

"the message on the heart" brings tears to my eyes! I agree with maybe looking in to megs mom contact. I also think Dr. Beals may be a good doctor for your daughter since he looks at many angles. I wish I could offer more comforting words. Please hang in there!!

It takes around 3 weeks for results.

gatito- I'm SO sorry to hear all that your family is going through! It breaks my heart!! Does Dr. J know about all this? Is she now taking the flagyl with the other abx? There is a drink called Good Belly (which comes in small 4 oz idividuals) that is full of vitamins/probiotics. It's dairy free, so easier on the stomach. It's strawberry flavored and has a smiley face on the opening--maybe she would try it. Last Jan-April, when we were dealing with the fear of swallowing/choking/vomiting, my dd was placed on 14 days of flagyl for Giardia and again 6 weeks later for c-diff. It really made a difference with these behaviors. We did see some herxing at first but then much better. Flagyl is also used for Lyme in cyst form. Hopefully, it will help with the fears (then you can at least try some ERP). Sending lots of prayers your way!!!!

Any suggestions for tick control for your property? What outside temperature kills ticks? Any brands of clothing have some type of tick repellant--for outside activities, hiking, exc)? Do tics prefer shady areas over sun? If you have one embedded on you, what is the best way to save it for testing? Lyme Mom- a while back you posted some info on prevention -- could you post it again. thanks

Caryn- Nicely done! Thanks for sharing Chemar!

Drawn: June 2009 Sex: female Age: 7 at the time Cam K: 137 Status: 8 weeks into exacerbation - turned chronic Treatment: post steroid burst & abxs; done prior to ivig Positive Lyme test: July 2010

That's great news! Is your son being treated for elevated Mycoplasma P IgM or IgG?

The infusions are done at his Darien location (infusion center).

I really wanted to attend the conference, but my dh was out of town and dd was sick...sigh. Do you know when it will be available on DVD?

My daughter is the same way. She seems to react to every vitamin/supplement we give her. She's recently been diagnosed with lyme, so I'm thinking it might be some sort of herx reaction. hmmm?

So sorry to hear that! Do you think the rash was Lyme related? You are a great Mom, SF Mom, your children are very fortunate to have a strong, passionate care- taker!

Can this test be done through standard labs?

Thank you for the reminder. I just forwarded my dd's info to her office.

Another thing we used to do is play games and offer food as incentives. My dd loves to play black jack (dad's doing), so instead of using chips we would use froot loops or cheerios (or something healthier). Make it as FUN as possible to eat food without too much emphasis on the food itself. We would dance and make funny faces while playing games. Even if she's not eating much, she is observing you having fun and munching on foods (which is also reassuring her that mom/dad don't choke on food). I know you must be so worried!

My dd8 had this for 3-4 months last year. She still has a very mild fear. It's hard to do ERP on this one, but I would let her eat anything she wanted at any time. Popsicles, soft foods ,exc. Try to keep foods near as well (a bowl of small sized cereal on the kitchen counter) at all times. Maybe try giving a small reward any time she can accomplish a small bite of something chewy like a mini marshmallow or granola bar (but still a favorite food). For obvious reasons you want to keep her well hydrated but also to keep her mouth moist--it's easier to swallow. My dd also had severe heartburn which fueled the fear of choking--prevacid helped in our case (this was before I found out about the lyme--so not sure if ok to use). I also remember your dd having a fear of vomiting. I wonder if it could be behind some of the fear of choking. In our situation, I had to work on it as well. I'm really sorry for what you are going through! Do you think a change of abxs might help? My prayers are with your dd!

Dd9 Cam K was 137 in May 2009 (Anti-L=320, Anti-Tub=2000, Anti-D1=4000, Anti-D2= 16000). It was drawn right after a steroid burst, so not sure if it lowered the number. Dd9 had a positive Igenex test in July 2010. This may not be helpful since testing was done a year apart.

Tracie and Doug- You might want to temporarily give advil. Hopefully, you will see 100% recovery with the full strength abxs/prednisone! Also, so sorry for the loss of your dog.

I would like to see the show. Thanks for posting. I read the book about this called Lab 257 and the author is very credible. Its all about a government biological weapons lab based on Plum Island and how the cow got out of the barn, sort of speak. The first head of the Plum Island Laboratory was an ex nazi scientist who brought his own tick collection over from Germany after WWII and they used these ticks to study diseases. They infected animals and kept the animals in outdoor pens in the path of migrating birds. Over time the facility degraded and needed repairs but with budget cuts the place got ignored. The chimney that was supposed to be sealed became porous so biological waste that was not supposed to get out, got out. He makes a compelling case that lyme disease exploded like a bomb right across the Long Island Sound and that it probably had something to do with Plum Island. I think it was definitely a factor in the spread of lyme disease. Thanks Michael- Interesting! I hope I get this channel.

Dabel- Have you considered giving the Augmentin XR a try? Since it seems you have success with the Augmentin. If you end up considering another IVIG, I would try to run the Igenex tests first. I also paid 13,000 for my daughter's first IVIG and then had two more, which fortunately were covered by insurance. We then received a positive Igenex Western Blot and are currently treating for lyme as well. Just this week, my daughter is again reacting to a virus--very frustrating! My thoughts are with you!

Airial- My dd9 says she knows every person by their own scent. She even claims she can tell who's in the other room by it. It has nothing to do with perfume or scented products--just ordinary scent. I definitely can tell she has a heightened awareness of smells which is greatly increased when in an episode. Although, what your describing does sound like a compulsion.

During my dd9 first major onset (3+ yrs ago), she licked everything. She licked walls, floors, shoes, people. I took her to a young new pedi, who sat her down and asked her to promise she would stop licking objects because it was getting her sick and upsetting her family. She looked him straight in the eye and promised she would, walked him to the door and when he shut it--she licked the doorknob! Thank goodness it resolved with that episode!

This statement is in the brochure "Psychiatric Lyme disease" by ILADS: Is there poor or paradoxical response or excessive side effect sensitivity to medications that are expected to be helpful for particular psychiatric disturbances? It could imply a warning sign of possible Lyme encephalopathy.

I hate this month!!! My daughter has also been sick since Thursday. It seems like a typical sinus cold, but boy are her behaviors ramped up. I think her system acts like velcro to all the germs in school. She's on the loop-to-loop to *#*@#! Tracie- Hopefully, the increase in abxs will get her back on track! Sending prayers!