Iowadawn

Hawks- Iowadawn here. Sorry I lost you on the phone the other day! This was pretty much our reaction and timeline for the steroid burst. Any gains happened during the burst, not after & then he got worse. I don't have really much advice b/c our journey has been so full of twists and turns. Dawn

you could be right... maybe...as there are sooooo many other bacteria,parasites,virus,germs,invaders, we don't know about...it's just one of those that respond to lymes...long term mcyo p...protocal..... i wish the docs knew/know...but they are ALL learning with us..and when a doc says "NO, No way"..science stops and we are in a world of hurt.... SF...i did save my younger boys cord blood....is there something we can do with that!?!?!?!?! i would have saved the oldest one's but did not know about these cord banks at the time.... Fixit- Pardon me for not following whose children has lyme or not. But if your children have Lyme or you do or think you do, and then enter the PANDAS, I would be contacting Cunningham and sharing that you have cord blood, and ask if this would be of interest to her or others she knows. It may be invaluable to research, or it may not---She is a wonderful gal who would not mind this type of question. I'd shoot her an email el pronto. MHO Dawn My intuition says it will be an "A-ha" discovery that solves this riddle, or puts us on better footing for tx options. Just my gut. It's been right too much.

dabel- You know your friend in Iowa is here for you 24/7. Dawn

WOW!!! WOrried Dad & NancyD!! You guys' situations give me hope as I see our boy on the couch post IVIG#3 one day. I had missed how much of a turnaround your children had taken. This is awesome and an encouragement!! We are on the PANDAS/Lyme & babesia/bartonella path. You give me hope. Dawn

I am afraid to ask what the herxing looked like on Tindamax.....Dawn

Mom love- We made the decision not to return to Chicago after finding a llmd in central Iowa. He & Dr.K both said that ivig tx for PANDAS & lyme would be beneficial. Once I found out that the infusion center at a large hospital would take a script for IVIG from a doctor not on their staff, we began the process of getting pre-authed. The Lyme doc is the doc ordering. He sent multiple appeals and we fought through the benefits dept/BCBS rep for my husband's employer. We just kept squeaking. The infusion center there doesn't do children, so they have them go to the pediatric dept of the hospital as outpatients to have the infusion. It took a few months, but that was how we did it. It isn't the first time he has ordered IVIG, but it was the first for him at this hospital. He didn't think they would do it. Wasn't an issue. Do you live in central Iowa. I can PM you if you want. Dawn Do you need actual names when you ask "Who is ordering"?

Just an update. For those interested in our situation, our ds 11+ is having hd IVIG this Sat & Sun in Des Moines. This will be a third time after two others that provided some relief-- for about 8 weeks-- and then a spiral. After the second spiral he was dx'ed with the 3 B's in addition to the PANDAS. We are not having to go to Chicago--we scratched & clawed with the insurance for about 4 months and now they say he is approved for a year. We know this hasn't always worked with some on the forum--having the approval gives the lyme doc the flexibility to back off if need be. We didn't even ask for monthly for a year. They probably got so tired of hearing from us that they want to get rid of us for a while!! I believe Evan is probably the first PANDAS patient in Iowa to have IVIG done for this purpose. Monthly dose is to be at .75g/kg. We do not know what to expect--but really no different than the last sooooo many years. We'll keep you posted. EVan is NOT tickled at all, but like the idea of getting it done in a peds unit where he will see other kids. Dawn

browneyesmom- Total empathy on the ambulance rides. One transport for ds11 was from school! Two from home with one event lighting up the neighborhood with colorful lights & sounds of all sorts. I feel your hurt. The ASO strep titer is a fairly quick one within a couple days. The ADB is one that has always taken several days. It always seems like a month, but it is just a handful of days!! Yes, and we have tanked after IVIG's, also. We have had good experiences in the child adol behavioral/psych unit. We have it in writing that he is welcome to utilize the unit in times of crisis or when he needs stabilized. His doc is the director. The environment is very structured, and predictable (especially since he's been there so often) that he is able to chill. We have been pleased with his tx. Mainly, just want to say you are not alone!! Dawn

Hello all- Thanks for the encouraging words. I will keep you posted. We see the lyme doc for Evan on Monday and will know more after I take the IGeneX tests for the three others. When our whole family was on HD Zith for a month in March b/c of the high strep titers I remember how well we functioned as a family. It was great for a month. I'll let you know how Monday goes. Dawn

Hello to all from a burr..zy Iowa! I'll make this short & follow up when I know more. All the IGeneX WB's are in on the rest of us and it appears we all have Lyme specific bands of some sort. We see the Lyme doc for Evan on Monday, so will take all of these along and see what he says and then go from there. As you may remember, our PANDAS son was dx with the 3 B's in Sept and then I was, too. We have all been struggling with incredible strep titers, also. Our 16 yo dd (adol PANDAS) had her ADB skyrocket back up to 5440 (again) after a round of clindamycin earlier this fall, when it was staying at 378/780. She has struggled with "feeling" well mentally & physically. Very functional, but I have seen her when she has done well on abx, so am looking fwd to seeing how the lyme tx will help. Will keep you posted. Dawn

Hi All! I just caught this article, and thought I would share it. It is brand new. http://www.stamfordplus.com/stm/information/nws1/publish/health/Time-For-Lyme-researcher-Karen-Newell-published10851.shtml Very interesting. Dawn

* When you take two vehicles to a family event just in case you'll need to return home early. * ALL the professionals treating your children are reduced to a one initial---Seems all the docs are B's, K's, T's or C's these days! Vowels, anyone?? * It's a bonus when the whole family attends church on a Sunday. Of course, you always sit in the back! And when you think it's a good Sunday to try a few rows further up--you'll regret you went out on a limb and tried!! * Besides "earning" a doctorate, researcher, microbiologist degree on your journey you can add professional drywall repairman, bouncer, & couchlady (my term for counselor/therapist!) to your shingle! Dawn

Any BCBS carriers--our Iowa BCBS ins is dragging their heels on approval of Evan's 3rd IVIG. We have others working on this for us. If you have rec'd approval on the autoimmune disease NOS dx. Could you PM me. Thanks in advance. Dawn

Back from the Lyme 8 week appt. We escaped the excitement of Tindamax for another month. We just started another month of Mepron. He gave us the option of starting Tindamax or waiting until the next appt in 4 weeks. I chose to wait for a couple reasons: we are seeing some good behavioral, mood, etc. etc. after a spiral that had Evan in the hospital more than out since late Sept. He is wanting to read again & be read to and is halfway through "WHere the Red Fern Grows"--and we read out loud. He has been much more flexible & has dealt w/ disappointments in a manageable way. The behavior yuck (violent/aggressive) bumps have been shorter duration & less intense. The smiling & laughing is so good to see. I felt we needed to keep him moving in this direction a bit longer before we change things up with the addition of Tindamax. The Mepron has physically slowed him down again(less stamina) and he seems feel & hurt more again. So until after Christmas--No Tindamax. Dang BCBS is dragging their feet on IVIG approval. We have a variety of people on their case. Evan has quite the "record" now for them to see, so I am figuring they are digging. Any BCBS IVIG approvals out there with 279.49 approval (auto immune disease NOS)? Please PM me. Finally rec'd IGeneX test kits for the 3 others on the family. Off to the doc for blood draws Monday. Will have her run strep as well on everyone while they are poking. Dawn

This will probably be what it is like here--suspecting we all are positive. No 30 pounders here, though (2- 130# & a 90!) I am holding off in order to get my boy through the worst. He can get way to violent. I am going to ask our LLMD if he will fax our GP so we can get my oldest I HIGHLY suspect is positive, so we can start her and then get the results of the IGenex & I can get her an appt. Will see him Tues. May need a cyber-drink with you all before this is over-and I don't drink alcohol except on rare occasions-so you know it's bad!! Dawn

I just envision the Bb cysts,all happy and snug throughout the body, all of a sudden screaming: " Holy Blankety---Incoming!!!!" KABOOM! KABOOM! eeeeeeeeBOOM! --A Pearl Harbor type of event with a Nagasachi fallout. I can't say I got a warm and fuzzy feeling from your posts, Wendy & lyme mom.

You probably are just past the midpoint of the yucky when the momentum will turn to a more positive upward trend. One day/hour at a time. Dawn

OK, all you cyst(ers)!! I am expecting Tindamax to be added to Evan's mix this week when we go to LLMD for 8 wk check. Will all blankety-blank break out we we start busting up cysts? This last week was much improved (this weekend has been yuck, but I'm ready to throw everyone out the door ) Just curious so I can brace. Dawn

When I see it rx'd for lyme it seems to be given fairly frequently. (I'm thinking, once a week). Our son had bicillin shots once a month for PANDAS and we saw him get "worse--way worse". We now believe, as does our LLMD, that what was happening was herxing. These shots are painful!! :o If you do have them have two nurses simultaneously do the injections (thighs). Ice the area before you have them and move around afterwards to help with pain. Dawn

Oh, Phasmid--I feel for you. Our son's anxiety has netted him 8---yes, 8 charges of assault in a month's time. We go before the juv court officer in a week. He has been in and out of the hospital for a month. We have had DHS on our doorstep & they came to the conclusion that we were doing everything possible--actually impressed with our history. (Probably a refreshing visit to them! I would like to have a little refreshment!! Ha ) We have letters from the docs detailing dx, tx, and goals. The court officer has these. Where am I going with this--Even though the docs all agree that most of Evan's behavior is due to his illnesses, for his protection, while we are treating him , & until he is more stable he is at home & not in school. We are skating on thin ice, and with a JCO that thinks a PMIC is the place for him we can not chance school. From a practical standpoint, continue doing everything YOU can to protect your son from himself while you get him well. I hope this makes sense. Prayers to you. DAwn

I love that: "What for?" Remember: God DOES give us more than WE can handle in order that we will lean on Him and others. Take these gals up on a phone call. You are not alone. Keep leaning---Dawn

There are so many people & posts in this thread to ditto with THANKS!! What a journey it has been. Without this forum I do not know where we would be. We are in the midst of Bb,babesia, & bartonella tx for our PANDAS ds11. I am positive & I just sent off for 3 more IGeneX kits for the rest of the family. I highly suspect our dd16 to be positive. I actually bet our whole fam-damnily is positive--NEVER would have found this in our son w/o you mom's. The cyst buster gets added to Evan's mix in a couple weeks. DITTOS Galore! Dawn

The babesia FISH was positive here for our son, as was bartonella IgM (along with Bb). The lyme doc didn't test these when they sent in my Lyme WB's. I am thinking that b/c I was positive for Bb (congenital) then, like SFmom, I am positive for these as well. Dawn

I apologize for not knowing your specific situation and what you have tried or tested for. Lyme can cause aching teeth. Hangs around for a while & then leaves. And all the raging stuff. Just chiming in. Dawn