philamom

In all honesty, this person was not pushed off this forum, and, was a tad disrespectful in his/her post to begin with. If the post were not deleted, you would be able to see that. With that said, I do hope this person continues to post, but that we can all do this in a more civil manner.

Dr. K once told us, in his experience, "some of the fastest responders are the one's with worse side effects". Of course, that was a year and a half ago. Keep up the hope!

Are you symptom free today? Can you share more of your story?

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive. Just letting people be aware there IS another side to this. Please be careful. Thanks Pmom! I appreciate your side as well! All I can say, is after 22 months since this last episode began, I am finally seeing real results. But honestly, I do like hearing all opinions. So what do you make of my daughter's positive Quest RMSF? (I'm asking this in true honesty...not sarcasm) --Thanks- Melinda Melinda, I have no experience with RMSF, so, I can't give you any answers. From what I read, though, most people become hospitalized from RMSF......was there a time when your child was severly ill? (not talking tics or ocd...I mean severely ill that she had to be hospitalized?) Anyway, I don't know if it is possible to have RMSF and never know it....perhaps.....like I said...don't know much about it. But, given the inaccuracies of tests these days...I would probably get a second opinion, maybe even a third, on the RMSF thing......and I would go to someone neutral who doesn't see tick borne disease automatically. And I am glad your daughter is doing better.....regardless! Thanks! No severe illness here. And the Bartonella thru Specialty lab? I'm tired of the endless doctors appts. If my daughter wasn't responding to treatment, I would seek more answers, but right now the lyme treatment seems to be working!

Please do not delete your account! I was excited when I saw your heading (what has/hasn't worked) in the PANDAS forum, only to sigh in despair when everything was deleted! I never had a chance to read it. I appreciate being informed in many different angles...it's how we become smarter & stronger. Why do you think the PANDAS doctors constantly comment on the amazing parents of this forum! "Together, we will conquer, Divided, we will fail" -- Even if we disagee on many things, there is one common denominator we all share= getting our children (or self) better!!!

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive. Just letting people be aware there IS another side to this. Please be careful. Thanks Pmom! I appreciate your side as well! All I can say, is after 22 months since this last episode began, I am finally seeing real results. But honestly, I do like hearing all opinions. So what do you make of my daughter's positive Quest RMSF? (I'm asking this in true honesty...not sarcasm) --Thanks- Melinda

Yes, you are right...my mistake! In my dd's result, I am more concerned with the ++31,++34 and ++83-93.

Momaine- We had a list of all antibiotics my daughter was on since she was born (got a print-out from the pharmacy). Unfortunately, my daughter was on them a lot for recurrent sinus infections. It helped along with the history, and of couse the examination, to decide which abx to start with, if you end up treating for lyme.

I think they are all upsetting to the stomach! We didn't have any barfing with our last two ivig's because my daughter was prescribed prednisone on the day of the infusions...it worked for us. Hang in there. Hopefully, by tomorrow you'll see some relief. Maybe call the doctor for reassurance?

fr88- Bottom line is, if you feel comfortable with the position your child is in, and that the protocol your using is helping, then stand by it. I know that doesn't apply to you...because you are a PANDAS adult, correct, in remission or cured? But I do want to mention that it was 10 months in between our first and second IVIG. So the wait and see approach did not help us! The antibiotics that eventually gave us the most improvement are Tindamax and Minocin. I'm pretty sure they're not prescribed for PANDAS, yes, maybe other viruses...so potentially. And, we did have minor herxing before seeing improvement with the abx treating for lyme. There is a lot of literature stating that kids can have Neuropsychiatric symptoms as their only symptom, or they missed the early minor physical symptoms (overlooked) and it continued into chronic lyme. No offense taken...just different opinions.

But when using Motrin & Advil, you need to space them 6 hours apart (correct?). I would use Motrin and then Tylenol 4 hours later, and then Motrin 4 hours later... I don't think a few days would hurt. We actually had a better response with Tylenol during our last IVIG, but usually I prefer Advil.

It was even worse with the 1st one- she got diarhea with that one. For those who have not smelled it, do you go into the bathroom with your children? I hate to admit it, but when she's home, I go in right after she's done. She could never flush the toilet because of the sound. Now that she's doing better, I could get her to flush the toilet, but I'm always on c-diff alert. So I secretly like to keep an eye (or nose--yuck) on things, and then flush the toilet.

Phasmid- I felt it was best to alternate with Motrin (or Advil) and Tylenol during waking hours for a couple of days. If his stomach can handle it. Hang in there!!

Wilma, Yeah! Never give up...continue to search for answers! You are a strong, amazing mother!!

My daughter had a positive Igenex IgM (3 positive bands & 3 IND). I was originally told by a doctor that this must be a new infection. Then our LLMD explained to us that if you have chronic (persistent) lyme, it can continue to stay in the Igm. Our goal is with the proper treatment to push it into a positive IgG.

Fixit- 39 is a specific Bb antibody that is still part of the CDC Western Blot (IgM & IgG) criteria.

UNDERSTANDING LYME WESTERN BLOT There are eight known Bb specific kda western blot antibodies (bands):18,23,30,31,34,39,83,93. Only one of these is needed to confirm evidence of exposure to Bb and can confirm a clinical diagnosis of Lyme disease. CDC Western Blot IgM criteria includes only two Bb specific bands for IgM (23,39) and excludes the other six Bb specific antibodies. CDC Western Blot IgG surveillance criteria includes 18,23,30,39 and 93 and EXCLUDES bands 31,34, and 83. It does not make sense to exclude ANY Bb specific antibodies in a lyme western blot IgG and to include only two of these antibiodies in IgM because all antibodies in IgG were once IgM. IgM converts to IgG in about two months unless there is a persisting infection driving a persisting Igm reaction. CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot criteria: 28,41,45,58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Bb genus specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having Bb specific antibodies. This does not make sense. This was in a handout from our LLMD. Igenex only test for Bb specifc antibodies. EDIT: By Igenex criteria, IgM/IgG is considered positive if two or more doubled starred bands are present. (Double starred bands are 23-25,31,34,39,41,83-93). Presence of only one double starred band or Indeterminate double starred bands in a negative report may indicate clinical signifigance. Daughter: positive Igenex IgM; negative co-infection panel. Went on to find positive Bartonella thru Specialty Lab and positive RMSF thru Quest.

I haven't noticed any smell during my daughter's four infusions. May it have something to do with getting it done in one day? Or did you notice it the first time, when it was done in two days (correct)? Just thinking out loud.

LLM- love the Polar Express Analogy. Great to hear your son's accomplishments!! Kmom- how did your appointment go?

Bragging is music to my ears! Way to go Mr. Smarty Pants! I'm interested in the life cycle as well. Dd is on Minocin for Bartonella and RMSF.

Thanks everyone! Like I said...praying for recovery for all!

Chemar- Wishing you well with your personal family business, and wanted to say thanks for all you do with this forum!

Fixit- it's soo hard to give percentages, because in some ways she's closer to 100%...others 85%. We were dealing with severe seperation anxiety. She followed me everywhere, even to shower. Now she's asking me to sign her up for after school activites for 3 of the 5 school days. She no longer cries in desperation, hanging on my leg, when I leave the house. So I would say that is darn close to 100%. But her sweet demeanor that I finally saw prior to this last ivig and dental appt. has not returned completely. But yes, I do believe we can get our children back to 100%

Fixit- some great questions...I hope I can help. I remember feeling so hopeless when I received my daughter's positive lyme test, even though she was not at her worst, symptom wise. Review of our history- Beginning at age 2, my dd would get constant colds that almost always turned into sinus infections. When this happened, her personality would change. In 8-10 days the doctors would then treat her with abx and the symptoms would resolve. At age 5, she had a severe onset of symptoms, including ocd, tics, urinary, sensory, emotional, (everything we read about here). She was treated with abx for sinus infection, and later for a c-diff infection. 90-95% symptoms resolved in five months. We first learned of PANDAS at the end of this episode. A year later, she had another exasberation. Resolved for the most part with antibiotics. 6 months later, another. This time she had PAN sinusitis, and was put on 3 weeks of abx and 7 days of steroids...again most symptoms resolved. March 2009, another episode. Abx didn't work...helped a little. June 2009: paid out of pocket for ivig with Dr. K. It helped some. Nov 2009: Dr. K & Dr. B both agreed she needed another ivig. Got a year's coverage with Dr. B. Dec 2009: her face became very pale, had major onset of heartburn/GERD Reflux. She vomited in our car, which turned into a severe fear that eventually had her unable to step out of the house for 3 months. Feb 2010: she had Giardia and was treated with flagyl April: she had c-diff and was treated with flagyl April: with therapy and the antibiotic change, we got her to CT for IVIG with Dr. B. July: another IVIG with Dr. B. After returning home, we received the positive lyme result in mail. started on zith. Sept: saw an llmd. Added in Amox. 2 weeks later added Tindamex on weekends. Nov: another IVIG. Dec: addded in Minocin. Sorry, lots of details. Questions- 1)Yes, I feel I'm getting the most results with the lyme treatment. 2)No, I don't feel IVIG was a waste of time. The first one (that cost us 9,000) didn't help much...some. The 2nd and 3rd helped a lot with her ocd..but not all symptoms, especially anxiety. Then we started treating with the combo of abx. After initial minor herxing on the Tindamax, I saw great improvement. Then we did the IVIG Nov 1st/2nd and lost all the improvement we made with the Tindamax. We are just getting back to where we were before most recent ivig, maybe even better. We also just added in Minocin (DEC 12th), and again, after some minor herxing we are seeing improvement. 3)I have decided to hold off on ivig for the time, and just treat with abxs. 4)Most symptoms are now reolving from the dental cleaning, except the squirmish movements and some oppositional behavior. 5) I feel my daughter is at 85% right now. Yeah! We did omit the Tindamax on two weekends (when she started the minocin & at x-mas, and each time she herxed for 2-3 days after resuming it. 6) Yes, I'm assuming a herx with abx change. She does seems to herx with all medicines/supplements. Although, I thought things would be a lot rougher with the Minocin...but just minor (2-3 days behavorial). Of course, this is just my scenario. Always here to help if i can... Melinda

WOW MANDY...FANTASTIC!!!!