philamom

I agree! Don't request what you would like done from your vet- demand it...or find another vet. Our vet also thought it was a little over the top, but was willing to do whatever we asked, given my daughter's circumstances. We treated our cats with abxs as a precaution and when one had to go under for a dental issue- we did a throat culture.

Ok Emerson- that just gave me goosebumps...yikes I'm so glad you're on your way to better health...you really deserve it!!

I recommend the basic Western Blot from Igenex (188/189--if I remember correctly) for $200.00. You may then want to seek additional testing with an llmd. We had a positive WB but negative co-infection panel with Igenex. We then saw an llmd who tested with a few different labs (Babesia with Igenex, Bartonella with Specialty, RMSF with Quest, exc) and my daughter came up positive for Bartonella & RMSF. The llmd also tested for a lot of traditional tests with Quest, that tend to be elevated in Lyme patients. Like someone said earlier in a post, you can run the basic Igenex WB, and if you decide later to add the co-infection panel, you just need to send a new invoice with signature (they hold the sample for 3 months). Though, they won't be able to run Babesia (co-infection), because whole blood is needed for the test...serum is used for western blot. I hope I didn't confuse you. Good luck! edit to say- I'm glad we went to see an llmd, because if not, my dd would have been just treated for lyme. She needed a different abx for the co-infections.

I highly recommend to hightlight or circle the statement about the modifier code. It took me 10 phone calls to explain this to our insurance company after part of it was denied because of the same cpt codes. We eventually got reimbursed.

amyjoy- is the stool test recommended to check for celiac done with Quest? Thanks.

You may want to look into Rynoskin tick repellent clothing for hunting (though expensive). For everday clothing, there is Insect Shield repellent apparel by Orvis. Any others??

You can have Lyme without co-infections and co-infections without Lyme. Most people with Lyme usually have a co-infection though. My daughter tested positive for Lyme (Bb) but negative for the co-infection panel with Igenex. We then tested the co-infections with different labs with an LLMD, and she was positive for Bartonella and RMSF.

I use Avon (Skin So Soft) Bug Guard Plus with Picaridin. They sell spray, lotion and towlettes. A more natural approach would be the original Skin So Soft, I heard it works as well...not sure how effective though. I'm going to check out the Ultrathon products.

And more prayers!

No fasting required.

I had the Igenex done at Quest...you have to pay a drawing fee (12?) if you are not having other labs done by them. The form must be signed by a doctor.

Tami, I'm over on the Lyme board mostly now. But my ds4 diagnosed Pandas initially then to my surprise and Dr. B's he tested positive at Igenex for Lyme. Basically, if you have positive 31 that's Lyme specific, so he definetly has it AND he's had it for at least one year. 41 is another band that indicates a definete LD. You may want to post on the Lyme board and you'll get a lot more experienced mom's giving you advice. darlene Band 41 is usually the first band to appear with lyme, but it's not lyme (Bb) specific. That's my understanding. I also was told band 31 means it's been at least 6 months, more likely a year or longer.

I find Alleve or Advil to help better with muscle/joint pain than Motrin.

Momaine- It's so hard to distinguish between a herx and a new infection. This is not a worsening of symptoms, but some symptoms that have been gone for quite some time, that are slowly creeping back. We've had days and hours of herxing in the past, but this is different. She even mentioned when this started 6 weeks ago that she felt different again. And, It coincided with strep going through the class, and a very minor sore throat. It's tough...because you would think she would be covered with all the antibiotics she's on. She also then had a sinus cold, and then the rash...so who knows. Yes, please let me know how you make out with the infusion. Hopefully, this is just a temporary increase for your dd from the cold.

sptcmom- Thank you for sharing! I would really love to hear your protocol...again thank you! Regarding the probiotics...I give around 275 billion cfu daily. My daughter has had past infections of c-diff and giardia. So yes, it's always a concern.

Can rifampin be used if you have elevated LF's? I was thinking maybe a change to Omnicef? I've had no luck with any doctor prescribing the bactroban nasal ointment. Thanks Wendy!

Elizabeth, She is on daily Amoxicillin 1000mg daily (since Sept), daily Zith 250mg (since July), daily Minocin (since Dec), and Tindamax 250mg on weekends (since end of Sept). I called his office when my daughter first spoke of feeling different and I had knowlege of the strep cases going thru the class. This was before we had the streptozyme result. They said to have her cultured, but if in a week there is still symptoms they could treat for strep. But I couldn't tell if the symptoms were a herx, or from mere exposure, or infection. And then I worry about c-diff with a change of abx...especially if it's just from exposure. Then when I called after receiving the positive Streptozyme result, they said to stick with the same abxs...that a lot of lyme patients often get strep. I will call again tomorrow. My daughter is not taking anything for virusus. Can you pm me the anti-viral product you are using? Thnak you! Melinda

Ok, I'm shaking a little this evening. Last two weeks my daughter's been nonchalantly asking when her next infusion would be. Since she's always been scared of them (though much better) I thought she was just trying to see if one was scheduled. Her last IVIG was Nov 1st/2nd. At the end of Oct, she was doing so well on the lyme protocol, that I wasn't certain I wanted to do anymore IVIG. Well, I proceeded and the infusion just stirred everything up for 6-7 weeks. We had a nice X-mas and was again seeing great improvement in January. Then days after our follow-up with her llmd (Jan 17th) she began displaying some symptoms. A couple of days later she told me she didn't feel right--she felt different again (a sign of strep). I went to the school nurse to request another letter go out to inform her of any cases of strep in my daughter's grade level (a letter went out in the fall). The next couple of days I received news of 8 cases of strep. I had my dd checked with a throat culture--negative. Since then, I've been slowly seeing more signs of symptoms coming back...including a slight fear of choking/vomiting returning, excessive potty talk, fixations, and placing extreme feelings to toys/stuffies, and noise sensitivity. I went back and forth on whether I should request an antibiotic change, but because of my daughter's GI history, I'm very hesitant to rock the boat. This week, I received her labs that were done on Jan 17th, and she had a positive Streptozyne Screen. One thing that is going well though, is school (but, she does have an awsome, awsome teacher who inspires the best in every child. I think he has mild adhd and encourages the children to move while learning and be creative. My daughter is excel-ing and getting wonderful grades while having fun. ) Now, in the last two weeks, I had to bring her in late 3 days because of some anxiety. So back to the point--things have been slowly regressing since the middle of January. Oh, and she also had a round circular rash appear under her armpit recently too. Well tonight she comes home crying, asking to please have another ivig, how it takes the feelings she's experiencing now...away. She said ever since around the time of the follow-up appt, she's became weird again. She also told me she's experiencing tingling pains up and down her arms. After I calmed her down, we talked for a good half-hour. She was afraid to tell me that she was feeling symptoms again, because she didn't want to see a psychologist again. She's also afraid I will talk to her friends parents, and her friends will no longer want to play with her. That they wil catch her disease. At the end of the night, she was begging me to call and schedule the ivig...this was the girl who was so scared of needles, that we couldn't even mention the infusion until the day of. I'm so tired and confused on what to do.

Thanks...I'm ordering it now! That's been the case with my daughter 9, but she's now asking many questions and wants to know if she can learn more. And thanks LLM, my daughter and I just read the tiger book you posted about...it was an emotional night and it helped to soothe the evening. We even acted it out...since it is more geared for younger kids...great message though! Maybe someone can bump the post.

fixit- advil or alleve might work better than motrin. I'm no expert on the detox, but maybe back down some on the Samento. I read here it can be very powerful. I hope he can still enjoy his party some! I'm thinking of you!!

I know, it's is a strange comparison of our story and yours and all mixed up with lyme. You know, the presentation from Ann Corson (is that her name?), about pediatric lyme, maybe that would be helpful for Wilma. That is the article that made me start to see the lyme connection with my son and the girls early life. Do you know where to find that? Susan Oh Susan, so sorry for the loss of your son! Dr. Corson's presentation is listed on Dr. Jones website. Hopefully, someone will post it. It's a very good read. www.drjoneskids.org Ann Corson- "What everyone needs to know about Pediatric Lyme Disease"

Our LLMD told me about the relationship between Bartonella and vascular lesions. I have not seen anything in writing about it though. Tried to do some searching about it tonight and I see some articles but I can't get any open for some reason. We don't have huge indicators of co-infections but my headaches and also my VEGF results, along with dd's hemangiomas was leading her to watch us for Bartonella. Susan I have seen something in writing, but can't remember where. I checked Dr. J's website and one other...but can't find it. If I come across something I will post. I remember, because dd has a large birthmark on her leg, and though not the same, it sparked an interest.

We only give a Tbsp...not even every day. I notice when I increase (even slowly), she gets frequent loose stools, many times with stomach pain. Is that commom while increasing? How is the family these days?

She hates yogurt and is sick of taking meds.. But she is taking all the ones that the doc prescribed. I will look into the good belly juice. The small "Good Belly" juices are strawberry flavored and don't taste like yogurt. I don't even think they have yogurt in them. My daughter loves the smiley face on top of the containers...we cut them off and slide em around for fun.

Was just wondering if anyone purchased this childrens book on lyme. Does it just focus on the physical ailments of Lyme?