philamom

SF MOM- I agree with the others on how invaluable your advice has been. Thank you from the bottom of my heart! As always, wishing the best for your family!!! Melinda

We travel to CT to see Dr. J

I'm sure he feels blessed when your daughter is not suffering as much-- Way to Go!!!

Sending lot of prayers!!! Please remember to hydrate with exta fluids.

Melinda, I called Igenex yesterday to find out about testing. The Western Blot was $260 and the complete co-infection panel was $660 for a grand total of $920.....does that sound right? The reason I want the complete co-infection panel is because my dd10 did have a known tick bite in 2006 and although I sent the tick to Igenex and it tested negative for Lyme, I'm not sure they test the ticks themselves for all those co-infections, so it seems prudent. My husband turned pale when I told him the cost! Jill Jill- my daughter did have a tick bite 9 months prior to her first major notable onset of PANDAS (tick bite in June 2006). But like I said before, she's been dealing with issues during illnesses since a very young age. Just not a major onset! I am know wondering if I passed lyme through utero and the tick bite just made things a lot worse. I did have a huge tick embedded in my scalp when I was a child--the doctor said it was probably there for 2-3 weeks and used a match to release it. Yikes! I dunno know--but then why did my daughter (at first) go into remission with abxs.

Vickie- my daughter was at 90% remission after her first 3 episodes (couple irrational strange fears remained). But since her 4th episode in March 2009, she never went back to baseline. At times, her symptoms increase (usually with illness) but then she goes back to just being...chronic. BUT, her daily intrusive thoughts have finally gone away! Yay!! That was the hardest symptom for me to deal with. Oh, and she no longer has severe rages as well.

Melinda, I called Igenex yesterday to find out about testing. The Western Blot was $260 and the complete co-infection panel was $660 for a grand total of $920.....does that sound right? The reason I want the complete co-infection panel is because my dd10 did have a known tick bite in 2006 and although I sent the tick to Igenex and it tested negative for Lyme, I'm not sure they test the ticks themselves for all those co-infections, so it seems prudent. My husband turned pale when I told him the cost! Jill Jill- I did run the Basic Lyme Panel at 260.00. But my daughter's llmd believes the lyme IFA has no value. So he recommends test #188/189 Western Blot Igm/Igg at $100 each (sorry, not $180). I also ran the co-infection panel which came back negative. But Bartonella has now shown with different lab. Uggh!

I would like to briefly give my dd9's history. Since age 2, my daughter would get sinus infections every 6-10 weeks with major emotional and oppositional behaviors, unlike her normal self. After waiting 8-10 days, her ped would prescribe antiobitics and all symptoms would diminish. At age 5, she had a major onset of PANDAS (ocd,tics,psychotic behavior) which resolved 90% in about 4-5 months. She was prescribed abxs at the time for sinus infections and then c-diff. A psychologist diagnosed her with pandas 3 months into the episode. A year later, symptoms (not as severe) came back. The psychologist recomended a throat culture for strep which was positive. Again most symptoms resolved after 30 days of abx. Ditto 6 months later with PAN sinusitis, symptoms once again resolve. March 2009: 4th notable episode (becomes chronic and we have been dealing with symptoms ever since). Abxs decrease symptoms but do not diminish. June 2009: had IVIG with Dr. K. January 2010: after some illnesses in the fall, she suddenly has severe heartburn, swallowing issues, choking issues, GI issues and severe fears that would not allow her to leave the house. April 2010: IVIG with Dr. B July 2010: IVIG with Dr. B July 2010: Positive Igenex Lyme test October: Positive Igenex Lyme test, Positive Bartonella test (Specialty lab), Positive Rocky Mountain Spring Fever IGG (Quest). All tick-borne diseases. I recommend getting the Western Blot ($180) done thru Igenex before proceeding with IVIG.

Can we make this a pinned thread that remains at the top? Also, maybe a pinned thread on recommendations of lyme books?

Mary- how many daily capsules do you give your daughter? Melinda

My daughter's Anti-D2 was 16000 and she had no tics (except eye blinking) with this episode. It was done 16 months ago. We recently found out she has lyme and/or PANDAS.

You might've tried to pick it up too early. I know with my plan, I would have to wait until the 9th day to pick up. If that's not the problem--try seeing if Dr. T will give you a new script for 30 days with no refills.

y

y

My daughter was born with torticolis. For the first 2 months after she was born, we stretched her neck into the direction of the pain 30 times, every 30 minutes, 24/7. She would cry in so much pain--my husband wasn't able to help. Then we switched it to every hour just during the daytime for 6 months. We were able to avoid using a helmet due to the stretching. So I'm guessing an underlying problem?

Michael- What brand of Silver do you use and how much? Thanks!

If she is on abxs, I recommend running the Western Blot IgM & IgG (test 188/189) at $200. If she is not on any antibiotics, then I would suggest the Complete Lyme Panel at $475. You might consider running the complete co-infection panel as well. You need to call Igenex and have the kit/order form shipped to you. Then have a doctor (any dr.) sign the form. You can also download the form off their website.

Do you know why some of the bands like this are lumped together and what does it mean if you are positive to them? That just counts as one band positive right? Susan Yes, it counts as one band. I think it's the same protein, just migrates differently in some people. It's specific for lyme bacterium.

Igenex also adds the 83-93 bands to the criteria due to their importance in the recurrent and/or persistent disease period.

y

Oh, I pre-ordered the cd-rom last week...didn't realize they would be offering other material. I thought I was ordering the entire conference on dvd. Oh well, I think i'll go ahead and order the $59 DVD-ROM.

I found it confusing as well. I ordered the 2010 Ilads conference CD-Rom for $40.00. I think it includes all of Friday's presentations.

I may be mistaken but I think the %'s above are for tick-borne diseases (infections transmitted by ticks). Ex...bartonella & babesia, Bb & Babesia & HME.

Suzan- Can you get in any earlier for your appt? If the llmd feels it is lyme, they will begin treatment while waiting for results. Hang in there!

It must be a lyme moment LOL. Kiddin aside -- hope you and the family are doing well. I just wanted to be sure I wasn't missing out on the rest of the conference. I was only able to catch Dr. Harris, Dr. Bransfield and Dr Gaito on Friday's session.