mommakath

Hey....is it possible the increase in OCD is related to the cyst form of lyme being killed off? Wondering for myself as well....ds12 has kept all meds the same and has had an increase in symptoms since IVIG 4 weeks ago, plus headaches and tingling in feet. I am thinking it is the body finally beating the lyme OR the autoimmune inflammation of the brain from PANDAS. Logicially, and hopefully, I am hoping it's the lyme being dealt with. Oh how I wish there was so much more definitive about Lyme and bartonella! And, PANDAS!!

My ds10, Pandas, and Bartonella had small moles, flat and under the skin, around his mouth for about 2 years. We were told they were moles by dermatologist and tried all kinds of treatments but they did not go away. We started azith, Tindamax, and Bactrim and they festered into sores and opened up and went away - all in two weeks. I took pics and sent to Dr J and he said he wasn't sure if it was lyme rash, but it had become impetigo. He had us use bactrim cream but we never needed them. We also had all of his above skin warts (20+ clustered in about 3 places) totally go away and stay away. Interesting, huh? My dd12, also same profile, has been talking about a tingling like feeling in her feet only when without shoes.....she now has to keep socks or shows on, also having lots of headaches and increase in panic attacks. I am thinking it is the immune system finally kicking in and fighting cyst form lyme....we are 4 weeks post-ivig on her. Interesting, the similarities.

Gosh....I say ask your LLMD and immunologist. Neither of my kids have elevated strep titers but are PANDAS / PITANDS - whatever category you prefer as the result is the same. Both are also Lyme and Bartonella. They have been helped by the IVIG. The immunologist recently told me that he did not know how long it would take to see total success (ie, no OCD, Ragining, Panic symptoms when exposed to illnesses of any sort) but that my kids total IgG levels were very low and they would need to come up before considering stopping IVIG. Our LLMD is in favor of IVIG in our cases. I would say each case is different. Consult with your docs who know your situation. There are so many variables out there with this "new illness" and I'd hate for any child to miss their greatest potential - so, I vote ask the experts that treat it! :-))) And, we've seen positive results and it has a cummulative effect. Best Wishes!

Wilma.....it was two weeks into antibiotic treament when my kid's OCD symptoms suddenly ramped up after months in hiding. I think this is normal and it does get better. Four months into treatment and see a big difference. DD12 and DS10 both PANDAS, Lyme, Bartonella, OCD. Hang in there!

Interestingly enough, my ds10 had warts in various places....around 21 in all....totally gone 2 weeks after starting lyme treatment. And, dd12 had a rash of plantars warts come out on her feet while on lyme treatment. Took 4 months and bi-weekly trips to podiatrist to get rid of them. THey kept spreading until we replaced all of her shoes.

There's a really nice Marriott a few blocks away right across from Yale campus. The Doubletree in Norwalk where Dr. B has a rate for his patients, "we care rate of $84, is nice but I would say it's a little to far to drive unless flying in and out of Laguardia or White Plains Airport.

Sorry sucha rough patch. We are PANDAS and LYME, both kids. Dr. J did recommend IVIG to us as well as son going downhill fast. Bartonella positive. Raging and becoming more and more depressed asking for his old brain back. IVIG was a true step in the right direction. Great 10 days afterwards, some old habits coming back in weeks 2 and onward, we are 7 weeks out and we have seena huge improvement. We go back next week for more 'brain candy' and I am taing daughter this time. I was scared and said I would never do it.....now, I'd take them more if I could. And, we would backsilde with every virus, sneeze, strep, etc. near us. So, this is my year to boost the immune system and I am even homeschooling them to help it out (another thing I said I'd never do). Best Wishes in your decision! K

My kids did have increase in the frequency of OCD "something bad" thoughts on these meds. However, they were not as strong as in past, just more frequent. It did last a few months. Now things seem to have gotten quieter. We go back to doc next week so we'll see what he thinks. Hang in there!! I keep telling myself it's just a season of life - it's not forever! Katherine

Please PM me with name sof LLMD in CT for adults. Need to get checked out, too! Live in GA but kids see doc in CT.

Our LLMD has said not in long bursts but okay for the 6 days we do it when we do IVIG. He said he doesn't like the longer tapers and bursts as they suppress the immune system too much. I asked it 5 times as we had done a long burst and taper before we knew were lymies and now we do the short ones for IVIG only.

From a Mom who said she would and could never homeschool.....I am and am so at peace since deciding and seeing all the great resources out there!! We tried 4 schools in 6 years. No IEP because it really would not have made a difference in the way the teachers treated my kids or in the way the other kids treated them. They are so relieved knowing that they do not have that stress on them any longer. One friend said to me, "How bad does it have to get?" So, I pass that onto you not to try and said it's what you should do, but just to say that it has made a big difference here. And, I'm actually a little excited :-) Plus, they're both doing IVIG and now they can stay out of the germs and build immunity, I hope. Best Wishes for clarity!!

Wilma, My dd12 pandas, ocd, bartonella, mycoplasma and lyme. Cam Kinese of 178 (Dr. C said it was one of the highest she had seen without tics at the time). DS10, bartonella, pandas, ocd, rages, non-conclusive lyme. Cam Kinese 137 unexacerbated. I know C is working with Dr. J (as of 4 months ago) and there is some correlation bt lyme and cam kinase numbers. Bartonalla is bad......it has made my son very sick. Finally starting to see progress after 4 months of treatment and it is not huge progress but I count every small step with great jubilation!! I just think there's a lot we don't know. Both of my kids onset at age 7. Interestingly enough, my nephew also had age 7 onset - pandas and now lyme. Makes me wonder if there's genetic something and if Pandas and Lyme are similar in ways we don't yet know. Such mysteries.....

I have dd12 who was on prozac for 3 years. Stopped. Started Zoloft 5 months later.....still on it. Can't say it's a miracle drug but I do think it has a place right now. DS10 was horrible on both SSRI's we tried.....he even started spitting them out in the toilet when we were not looking. He did that for a month before he told us because they made him feel so bad. I think you have to try and see. Everyone is different.

Friend with sick child.....sounds like Lyme. Need LLMD for 20 year old. Any suggestions? Please PM me. THANKS!

We have done intensive therapy with Dr. Storch there at USF and when he was at UF on both our kids. Hard thing about therapy is they have to be well enough to do exposures. For our ds12, it was a miracle. It allowed her to cope with the OCD symptoms and is a life lond skill that she will use over and over again in her life...even in non-OCD situations. It gave her confidence that she can cope. Our son, they never could duplicate the anxiety so we did not benifit as much. LOVE Dr. Storch and his groupies!! ERP/CBT with this fab team will not be a waste. I trust Dr. M felt she is not too anxious to benefit. We did IVIG 2 weeks ago and it has been a miracle! One week of my old son back. THis week I see old ways creeping back in but this is normal as it has a cummulative effect the more you do it. My experience with IVIG was wonderful and my son can't wait to get it again! Whe I started the PANDAS / Lyme journey, I said I would never so IVIG. Now, I am so thankful I have. PM me if you wish. Where do u live? May know a PANDAS doc closer for you that us not top name yet!! She works with Dr. M but believes in IVIG as her father has it monthly for other immune disorder. Best wishes!! Katherine

Our doc encouraged LOTS of fluids.... I paid my ds10 a dollar for every bottle of water or gatorade he would drink over the 4 day period (2 before plus 2 of). Prednisone two days prior, 2 days on, and 2 days afterwards. Bendaryl 2 days of and 2 days afterwards. Motrin 2 days of and afterwards. We did day one of transfusion with no side effects....all good. Sped it up day 2 and had severe headache. Lots to eat as well! Best wishes.....it made a huge difference for us for a week....we're 2 weeks out and I see old ways creeping back in. Can't wait to get it again!

Dr. Robert Bransfield in Red Bank, NJ. Was given his name by Dr. J. He is VERY well published (can send you some links) and I was told he can tweak meds like noone else. He is Lyme and Pandas.

Tried to PM you but you can;t receive messages. Got a great name for you.....Katherine

We used to be a patient of Dr. L and she is the one who suggested the Igenex testing on ds12. It came back highly positive both CDC and Igenex wise. She really did not know what to do with it. She said he Augmentin XR would cover it. That is not the case. And, the long steroid taper she uses can be one of the worse things to do for positive Lyme. We sat on it for 7 months before getting a LLMD opinion and wish we had gotten it sooner. I firmly believe if you suspect a child has Lyme, let an LLMD treat that and find one that will partner with your PANDAS doc. They are both specialists in their own right.

I am a newbie at Lyme but Dr. J did say that IVIG would only HELP my ds9. Dr. B did not recommend it for my dd12. So, I do think it is all on a patient by patient basis. Dr. J does recommend IVIG as well sometimes. Ya know.....if there's good that can come from it, I say leave no stone unturned. I do see where these forums are VERY helpful for sharing info but what is good for one is not always good for the other. Perhaps that is why some dos recommend different things for different kids. My two kids have never been treated the same but both have Pandas/ Bartonella. Just for what it is worth.

Anyone getting IVIG those dates with Dr. B? We'll be there!

Want to chime in on the rash....ds9 on Bartonella treatment and had flat mole looking things around his mouth and under his skin for 2 plus years. We were told they were warts by dermatologist and treated with sacacylic acid and some cream for weeks....no change. They would increase and then decrease in number for no reason. Started Bartonella treatment and they increased in number within 2 weeks....tons of them. THen they came above the skin and got red and irritated. I took pics and sent them in asking if lyme rash. Dr. J said he wasn't sure what it was but that it was nows caused by strep/staph. Cleared on it's own but thought all that interesting - esp since my ds9 is also PANDAS kid and had been symptomatic while broken out. So, you can take pics and send them in. I love that office....very caring and supportive!

Smartyjones, May I ask what TDI is? Any LLMD's in FL?

We are up for IVIG in a month, our first. Diagnosed with PANDAS in September, Lyme in January. When Lyme doc saw all of the testing, inclusing the immunologists testing, he recommended IVIG. Infact, just said, "he needs it". His office said they have seen lots of Lyme kids really helped by the IVIG. And, they did mention they could herx, but that it is worth it. I am hanging my hat on the advice as they have nothing to gain by advising us to do it. It is sooo hard to make all these decisions. I know all of us just want to to what is best!!

WOW! My daughter had this all the time as an infant on her trunk. I just learn so much here! Thanks!