SSS

Flmom, Lyme is one of the most difficult bacteria's, as it has/ converts to 3 life forms, and different antibiotics target different forms.
 
This link/ guideline is very helpful in explaining:
 
http://www.lymenet.org/BurrGuide200810.pdf

I'd limit the amount of time spent on the details of Pandas - keep it simple - an allergy to strep, a sudden bundle of behavioral symptoms, medical treatments available...
 
But I'd want new teachers to know two things -
 
1. many, many behavioral issues are medical - not bad parents, bad kid, etc.
 
2. always believe in and support the child. Let him know you can see past the behaviors and know that there's a bright, valuable kid inside. Yes, you have to teach to the child's current abilities, but when a parent says their child is "more" than what you can see, believe them and resist the temptation to mentally assign the child to the "less intelligent" or "problem child" category of your students.
 
My son's teachers have been consistently amazed at his abilities and character once they've been able to see the "before and after" kid. The ones who believed me and somehow reached the "inner kid" are the ones who've made a lasting difference. They helped my son build self-confidence and resilience because he know they believed in him.

We pay for our healthcare in this country (US).
 
My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN,
 
we only get 80% of every insurance approved Dr. appointment/hospital stay covered.
80%! Last year it was 90%, now 80%.
 
Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said:
She has PANDAS. I can't help you.
 
He billed our insurance company I don't know what, but I got my 20% bill for around $80.
So, $80. bill, after my monthly fee, $2,500 deductible, for a 15 minute conversation of:
Can't help, bye-bye.
 
So you see Pik, welcome to American healthcare 2014.
It is what it is.

You may feel doctors charges are outrageous and unethical but in this country doctors can charge what they like. In my mind, $400 for an hours service from a doctor who doesn't take insurance and has special training is worth more than paying a pediatrician who takes insurance $150 (less what insurance covers) for 15 minutes and getting nowhere because they have zero knowledge of PANDAS.
 
I understand your frustration but blasting a doctor because you disagree with their charges doesn't get you very far. We do not see Dr T but we do see another doctor locally who does not take insurance. Most of us are in that boat.

We worked with a PA briefly and initially on the thorough intake process. Now we primarily see a pediatric CPNP and Dr J.
 
We had similar concerns initially since we are a 10 hr drive from DC. I recall we either called or emailed them to get a good feel for their expertise before we made the trip. Once there in DC, we were pleased we made the trip. They were the first providers who sat down and went through a complete medical history from start to finish to get a "big picture" view -- all other providers in comparison seemed to focus only on areas related to their specialty.

Thanks so much for your posts and your well wishes. The info is very helpful. We ended up being exempt for Religious reasons. I am a little worried about him getting the chicken pox as an adult.
 
Last week, I showed my son a video of when he was really sick with PANDAS 3 years ago. His face dropped as he watched it-- almost in disbelief. He asked me to send it to his e-mail too so he could look at it as a reminder when he starts to feel anxious. PANDAS kids forget how sick they were.

DS10 has had PANS for 5 or more years. In the 5 years, this is the first time that I have seen him 98% tic free, urinary frequency free, OCD free and anxiety free. It has been a long, long time since I have seen him so relaxed. That being said, he normally backslides when school starts in the fall. So Fingers are crossed. To me the big change has been finding the source of the infection. He had been on a daily dose of azithromycin, and it was making his PANS manageable, but he still had urinary frequency and tics indicating an underlying infection. So thanks to this forum and the kind parents who answered my call for help, I got contact information for an integrative doctor that suggested that my son had Lyme. IGENEX testing confirmed the suspicion and answered the riddle as to why he kept getting viruses. DS10 is 8 months into Lyme treatment, off abx and progressing. Treatment now consists of herbal abx and supplements.

** sorry, I missed this earlier. Some thoughts:
The Lyme and co- infections are eradicated enough so that the immune system can take over/ keep them in check.
Complete lifestyle change probably necessary: reduced/ low stress, very clean healthy diet, w/ no inflammatory triggers, no alcohol, exercise consistently, 8-9 hours sleep at night, rest when needed, perhaps meditation.
Dr. Horowitz's book 'Why Can't I Get Better' talks about all the bodies systems, like thyroid, gut, those need to be working.
That's the idea.
So, you get there, cruising along, and say you decide to take a longer prescription of steroids for some reason, the immune system shuts down,
a sleeping spirochetes wake up. Or you go into major surgery, same thing. Could relapse.
Is it really possible to kill every single tiny one?
I have read a well known Lyme Dr. saying 3 years remission, home free.
Personally, as an infected adult who had this going on for untold years, did heavy treatment,
I will always, always have to take my health seriously, put time and effort into it daily.
I'm still on some herbs, special diet, etc.

Thank you for sharing that Deedee, I understand.
It was our LLMD when we went back last month (after a very long break in treatment for dd) who asked we see a specific PANS specialist, hence our appt. next week.
Filling out the PANDAS/ PANS packet/questionnaire for the upcoming appt., and looking again at a written history I put together, was enlightening.
My dd also continues to 'ramp up' when exposed to illness, saw it this Spring when her little non-PANS sister kept getting different illnesses from school. But, she wasn't on any prophylactic or treatment antibiotics, etc.
I find one of the most stressful and difficult things about this illness is just how much serious decision making is left on the Mother (and some Dads who guide the treatment decisions.)

Absolutely. The burden of our child's healing is upon us. It shouldn't be! Our healthcare system should be on our side and dealing with this, but Pandas/Pans is still relatively "new."
 
I wish we could fast-forward 100 years from now when (hopefully) the rest of society and healthcare will have created amazing ways to deal with our children's issues.

SSS: I wanted to comment on your post.
 
One thing I learned from Dr. G in San Rafael is those low in Amino Acids will have difficulty making IgG. We have recently tested our children's amino acids because they have such compromised immune systems. We tested through Dr's Data but none were deficient.
 
On the flip side, Dr. M in Pleasanton is now treating kids with 'neuropsych symptoms' with very high doses of amino acids when deficient to help balance neurotransmitters. We haven't discussed her protocol in detail but we have talked about the successes of this type of therapy. We do get reimbursed for Dr. M visits as she is considered in network for our insurance. You would need to see her once a week for testing during protocol. It might be worth a visit to her.
 
I have just breezed this article and haven't read much up on this therapy yet but thought I'd attach anyway.
 
http://www.steinorthopedic.com/pdf/aminoacidtherapy.pdf

For us, it was many, many months of combo abx. Once it's been there for awhile, one month is not enough. For us, treatment was more than just abx. It included nutritional supplements, removing some minor mold issues and some other things. Some have been helped by homeopathy but it didn't help my son. Our LLMD is about an hour east of Dr B. But as others have said - there is no "right" doctor. They all have their pros and cons. It's a matter of finding the "right" doctor for you.
 
You mention your son getting "emotional" on antibiotics. You may want to search the forum archives for "detox" and "herx" - and google "herxheimer response" - a "worse before you get better" response very common in lyme treatments. Also be sure to add 30-50 billion CFUs of probiotics, taken at least 2 hrs away from antibiotics, to replenish the gut bacteria that gets killed by antibiotics.

It did not say Igenex came back negative. Waiting on Igenex testing that Dr. B had the knowledge and experience to order. AND once Igenex test is back, it must be looked at closely to see which bands are reactive.
 
To OP: please make sure you have your own copies of EVERY test that has been run by Dr. T's office-
we all need to make sure we have copies, and look them over, too.

It did not say Igenex came back negative. Waiting on Igenex testing that Dr. B had the knowledge and experience to order. AND once Igenex test is back, it must be looked at closely to see which bands are reactive.
 
To OP: please make sure you have your own copies of EVERY test that has been run by Dr. T's office-
we all need to make sure we have copies, and look them over, too.

Hi Kara,
 
So happy for you and yours. I believe it was you who first helped me over a year ago. We first met online at the OCD parenting forum. It is Janice from Alberta. My son recently got to baseline...6 years after onset and YOU are a huge part of that. THANK YOU. That is so inadequate... When I get some time I will sent you an email.

HI There...
 
I have not posted in a very long time...but we've just had such an incredible few weeks...and I can remember how reading stories like this when we were in the worst place would often give me hope.
 
My dd is now 12. When she was 7 she had debilitating germ contamination fear OCD...couldn't get dressed, couldn't make it to school...I could go on and on, fight or flight rages, adhd like behavior, barely passing the state exams, etc. etc.. I know many of you know exactly what I'm talking about.
 
Dr. B. initially diagnosed and treated for PANDAS, but he eventually found Bartonella and referred us to Dr. J. who also found Lyme. We treated her for three - four years. She finally went off abx a little over a year ago.
 
Anyway, she just finished sixth grade. She struggled in school from 2nd - 5th grade. She even had a difficult start academically this year. But we just finished the year. She participated in cross country during the fall (and received the coaches award). The other day they had a moving up ceremony. She received the science award. She was inducted into the National Junior Honor Society. She made it into the 95+ club (kids with a 95 or above average in every subject). She also received what they call "the bucket" award. While we knew about the other stuff, we had no idea this was coming. But this award it is for the child that comes to school every day "with her bucket full." and "who fills the buckets of everyone else," They were describing my daughter as someone who comes to school every day with a smile on her face, is always kind to others and always asks what she can do to help. I could barely breathe when this occurred. Tears just welled up. No one but my husband and I had any idea what this all meant in terms of how far she had come.
 
My son, too, also had Lyme. His symptoms were mostly physical...although he also had some anger and depression.... But after 6th and 7th grade years that were marked with lots of frustrations regarding behavior (not so much acadademic) he finished the eight grade school year with all sorts of accolades regarding his progress and character.
 
So, for those of you that are in the thick of it now...first, my heart and prayers go out to you. But please know, there is hope! It was a one step back, two step forward recovery for us. And I can't say I didn't sometimes question whether we were on the right path. But we stuck with it even through those moments of doubt thanks to many people on this board. And while I don't log on to this board much anymore (I now am back working full time + and dealing with the logistics of kids that are active an involved in a lot of things), I am always willing to answer emails. I also run a support group here in Salem MA. I will post the next date in a separate post.
 
With appreciation to everyone who has help us and thought of healing for those of you who are still struggling,
Kara
 
 
 
 

Bartonella and babesia are two infections usually associated with lyme and are often transmitted by ticks, so they are called coinfections. There are others; Rocky Mountain Spotted Fever, ehrlichia, anaplasmosis, tick relapsing fever, Q fever, Powassan encephalitis, tularemia. Most of these infections are transmitted by ticks, but some of them, including bartonella and babesia, do not require a tick bite for transmission. Exposure to cat saliva, and especially that of wild kittens who's immune systems have not matured sufficiently to deal with infection can cause transmission of bartonella.
 
 
http://www.kentuckyindianalymesupport.org/2013/07/01/a-bartonella-guru-speaks-out/
 
http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf
 
http://pediatrics.aappublications.org/content/121/5/e1413.long
 
Babesia is a protozoan parasite that acts much like malaria. Transmission is generally stated to occur with tick bites, but many LLMDs feel that it can also be transferred during blood meals of other biting arthropods like mosquitoes, and the biting flies, which makes sense to me because the protozoan parasite malaria is transmitted in that fashion as well. It can also be transmitted through the blood supply.
 
http://www.aldf.com/Babesiosis.shtml
 
The presence of an EM rash (for lyme) or a bartonella rash is not necessarily a component of these infections. Our daughter tested positive for Bartonella hensalae but has never had an EM (lyme rash) or a typical bartonella rash. Where she got her infections from we don't know.
 
Lyme, bartonella and babesia are all immune suppressive, opening the gate way to other bacteria or viruses that would normally not be problematic.
 
DD was born with light/sound/touch sensitivities and things just went downhill from there. She reacted poorly to her MMR vaccinations, becoming apraxic and losing motor/executive function, which may have been the result of an improperly functioning immune system caused by her infections, which our LLMD feels are probably congenital.
 
Her PANS symptoms (ticcing, urinary frequency, raging, loss of fine motor function, insomnia, social regression etc.) started in 2008, but her bartonella pain symptoms didn't start until 2 years later.
 
DD's PANS symptoms resolved initially with bartonella abx treatment and are now resolving further with bartonella/babesia herbal treatment. Where her infections were acquired I may never know. I am treating myself with the same herbal protocols and recovering from my own symptoms indicative of bartonella. I have never been tested.

Hi Cara
 
I went back to look at my son's Cunningham Panel results. The first results indicated Unlikey because nothing was elevated. My son was having symptoms but had just been on an antibiotic for a sinus infection. However when my son got a double ear infection,all his symptoms increased ( headache, vocal tics, hypersensitivity, tremors, muscle and scalp pain) everything on the second test was highly elevated. To me this test is confusing but it did let me know that whenever my son gets sick, the antibodies are present.

I agree, my son had overnight onset of tics also. I specifically remember the day and time it started. I took him in that day and Two rapid tests came back negative. I begged the dr. to run all the strep bloodwork and he reluctantly agreed although looking at me like I was CRAZY. He called me back days later saying it was positive for strep and saying he believed it was pandas. He had never treated pandas before in his 14 years of practice but at least he was open to it. He started treatment immediately then referred us to a pediatric neuro who is currently treating my son with long term abx. He still has flair ups and the anxiety is still bad at times but overall the tics are almost nonexistent. I believe you should listen to your mommy gut and try to get that baby of yours some more antibiotics. I am glad I listened to my gut and did not take no for an answer. Maybe the reason our pediatrician has never seen pandas before is because he never tested for it before. He tried to say my sons tics were stress related as well but I knew it had to be more than that.

Our daughter's ASD diagnosis has also been withdrawn after 2 years of abx treatment for bartonella and now herbal treatment for bartonella/babesia-like-organisms (she tested negative for both B microti and B duncani).
 
The impact of infection on brain function is completely under-estimated by mainstream medicine.
 
Our doctor was an ILADS trained LLMD. She informed me of the association of bartonella infection with PANS reactions and assured me that DD's PANS symptoms would resolve with treatment for infections. They have.

More on my saga...I am now about one week into a dairy free gluten/dairy (casein)/egg for both my children. 2 1/2 weeks really, but it took me 2 weeks to realize my mistakes.
 
My non Pandas child: Today, he had his second CBT session. After the session, the therapist said, and I quote, "I have to admit, I was very skeptical about food allergies, the research is not there. However, I can not deny the difference in your son. He is a completely different child that I met last week". She is re-opening her mind.
 
Pandas child: His reading has jumped up big time. His focus and ability to dissect words have taken him to grade level.
 
While Pandas is an entity all on it's own, I have to believe that food allergies are also playing a role into his ADHD symptoms. Maybe, maybe not. This will be interesting.

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
 
I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
 
Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

I was hoping someone else would reply to this, because my thoughts are tainted with the hardship and strife of trying to treat and recover chronic Lyme.
And, my answer is not moral.
Is your dd currently on daily antibiotics?
If not, and you need some,
I would lie. I would tell the Dr. it was an imbedded tick,
you live in endemic state,
you need 30 days at least.
Take pictures of the rash for the future if necessary.

I was hoping someone else would reply to this, because my thoughts are tainted with the hardship and strife of trying to treat and recover chronic Lyme.
And, my answer is not moral.
Is your dd currently on daily antibiotics?
If not, and you need some,
I would lie. I would tell the Dr. it was an imbedded tick,
you live in endemic state,
you need 30 days at least.
Take pictures of the rash for the future if necessary.

I shouldn't have wrote 'wow, no PANS'
that was dumb of me- I'm sorry, what a dork.
I am very tired today, too!
I did just go read Moleculera Labs website after realizing I probably shouldn't be commenting on old knowledge from a bad memory, and
it does not say the Cam K number is THE number,
rather it looks at all 5 results,
oh and by the way,
it's a clinical diagnoses,
and I am not a Dr. nor a genius,
sorry again!
 
Wish I had something witty and encouraging to end here with (where's LLM?)
but instead know I'm sending you good thoughts fellow mama, and you are not alone.