JAG10

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

For your dd, has your doctor been using the 1.5 g/kg ....or a lower dose but more often? How often? You can PM me if you're not comfortable putting this all out there.

What does this mean...1900? What is this a measurement of? What dose of IVIG is the autoimmune dose and how often is your girl receiving it? Does your doctor treat other children with PITAND or just others with autoimmune disease and experimenting from there? And that is not an attack on your doc....i realize they are all experimenting at this point.....just trying to learn from your experience. Do you think the immunologists are the best suited to treat PITAND? Thanks so much for sharing!

That is interesting. What does he base that time line, 1year/3years on...experience with Lupus? Are there other drugs in the pipeline for b cell dysfunction?

You know what strikes me about this thread? Our kids are different in so many ways..... mine's in puberty, yours in diapers; yours tics constantly, mine has the attention span of a flick; ect. BUT...not one post on this thread didn't resonate in my heart and soul. I think many agree and thus the "great post" comments. It's healthy to get our feelings out whatever they may be. It's OKAY if you can't appreciate any positives, you may not be there yet. It's OKAY if you don't feel like this has made you or your family stronger....maybe IT even broke up your marriage or your kids aren't all under the same roof because of IT. It's OKAY this thread is heavily peppered with the word HATE. It's okay if this disease has made you question your faith or made you ask yourself who are my genuine friends. It's OKAY...we're here to listen because your feelings are valid and important, whatever they may be.

I do have a list from Dr. T on his official script with all of his contact info! He gave me the same thing and I took it right to the lab....bypass the pesky ped.!!!!!

Momcap- I know Dr. T can scan certain things...can a doctor scan a script and send lab orders as an attachment? I don't know if that is allowed. Why don't you ask him to snail-mail you lab orders? Or ask him to write an email requesting lab orders be written by the ped, you print it out and take it with you and if the doc has any issues, tell him to call Dr. Trifiletti. I hate the inappropriate clothing for the weather one; I've been peeling off gloves and scarves all week as it has been in the mid 60's here.

Thanks Kim & SmartyJ, I just went and did the same thing..... made me think I should have started at the beginning 9 months ago, then all of Buster's wonderful posts would have made more sense to me:wacko:

I'll jump in this free therapy!!! I hate the years of childhood lost, yet always feeling I wish she wouldn't act so immature. I hate that even when things are getting better, I'm just waiting for the other shoe to drop. I hate the beaten down look our family displays when IT/SOT makes an appearance just to let you know you haven't won and you'll never stop looking over your shoulder. I hate the un-Christian resentment I feel toward the families of kids with "medically acceptable" illnesses, how communities trip all over themselves to help those kids/families and all we have is this forum and a handful of underground doctors.....but I am grateful for that I hate that this microscopic enemy attacks the BRAIN!!!!! I remember when I was first pregnant praying....God, I don't care if she isn't beautiful or popular, just make her kind and smart. Little did I know that I should have prayed for a healthy brain instead. Woe is me.... I hate feeling like such a failure. I've NEVER worked so hard and long at something as I have trying to get my baby's brain back.....and never have I put this much effort into anything and gotten such crappy, mediocre results.

My dd10 had livido reticulitis on her arms and legs before IVIG, but now it is gone. Dr. Trifiletti helped us figure out what it was and initially said it was unrelated. Then after researching it further, he said it can mean nothing and is common in females when chilled or it can be associated with autoimmune dysfunction. I'm betting the latter since it went away with IVIG.

Yes, that's right. And this info is not from her presentation last week, it's older than that. But that is what separates strep and myco-p from the other "co-infections", they are passed via human secretion. I know myco-p is listed that is can be insect transmitted as well, but is that a different type of myco? But, based on her info above, we don't ALL have all these infections if you extensively test. However, it seems there is a good possibility at any given point in time a large number of people would pop positive for strep, myco-p and Bb, right? Another question.....we don't know how long it takes for titers to fall for strep (many months?) or myco-p (many years?) What about the measurements for tick/insect transmitted diseases? Do you treat them until they are undetectable by blood test or until the person is asymptomatic??

I wasn't able to find incidence percentages of symptoms....and the symptom list just goes on and on... On the recommendation of Pacificmama, I did check out Ann Corson and found this slide (not really sure how it will post, sorry) on incidence of coinfections with Bb as the star of the show. This is not population at large, just during a time frame in her practice. Thought it was interesting since I live about an hour from her office. Local prevalence of coinfections  80% coinfected  40% two infections  26% three infections  9% four or more infections  100% had Borrelia burgdorferi  32% Ehrlichia chaffeensis (HME)  30% Bartonella henselae  25% Babesia microti  13% Mycoplasma fermentans  9% Anaplasma phagocytophilum (HGA)  8% had both HME and HGA 77 pediatric patients, aged 10 months to 19 years, evaluated in my practice between July 2003 and July 2005 Corson, AF. A Family Doctor's Perspective on Tick-Borne Diseases In Children. The Lyme Times Summer 2006; Children's Education Issue: p. 3-6

Can we examine this more? I know it isn't scientific per se but I'm trying really hard to understand. So this long list of infections, Lyme just being one of them (but the "lyme" name is the one that is being generalized) have what in common? They get into your system from some insect (NOT just ticks) "biting" (really they are stinging or piercing you) and that is what is separating those infections from strep? Can you get strep from an insect bite??? You can get strep and staph through the skin, so I would imagine you can, just not sure you can get it from an insect. But myco-p and strep are different because those bacteria can spread through human secretion? And the others on the "lyme infections" list...not by secretions, but can be passed congenitally? HOW IS THIS NOT ALL PITAND???? If we examined extensively 1000 random children, how many would pop positive for 4 or more infections on the list?? Any studies on the list of infections (I don't want to call it Lyme bcs that is deceiving, that's just ONE of them) in the pediatric population tested and retested to the extent we are hearing of here? If evidence of several of these infections having made their presence known in childrens' systems is "common", then wouldn't the difference in our children be the t-cell/b-cell dysfunction? What about Dr. Trifiletti's theory about the toll-like receptors becoming overloaded as each infection "piles on" to a child's system? I've shared this a gazillion times; one of my dd10's WORST OCD symptoms was getting "bug bites" and scratching them until they were an open wound and then picking at the open wound over and over and over.....until several of them became ulcerated...the silver lining being that this scarring, dramatic, self-injurious behavior is what finally got us on the right PANDAS/PITAND track. (Of note, Dr. Elia's exact words were "I suspect there is a bug or "infection" involved here-she was right, just not very willing to DO much about it!!) DD has had 1 tested "lyme" negative tick bite (the tick itself was sent to IGENEX in 06-who knows if they tested it for the whole list!) BUT she's had HUNDREDS of insect bites. The most dramatic and undeniable improvement from her IVIG in May is that this has been the first summer/fall in 5 years where the whole bug bite issue has been non-existent!!! Maybe the name change will be good and bring this all together if it is all the same mechanism of system dysfunction rather than what flavors of infection has your child scooped-up.

I just read the link posted by pixiesmommy on the Lyme board: http://www.lymememorial.org/Transmission.htm Many of the infections (including myco-p) listed are reported to be transmitted not only by ticks, but by mosquitoes, fleas, mites, ect. Well, if that's the case how many typical children, if tested to the extent many here are having their children tested, would come up positive for Lyme or the laundry list of co-infections??? Isn't it safe to say our kids get more mosquito bites than tick bites? OMG, what about the whole bedbug phenomena?!?! Then this brings us back to the chicken/egg debate...do all children (and adults) have evidence of these infections if you look hard enough, just like all/most children have had a strep infection? But, there is something wrong with the immune system of our children that results in the neuro-psych dysfunction. Maybe the infections are VERY common, but their body's reaction, processing of, storing of is not?? My dd10's myco-p IgG DOUBLED when comparing a month before IVIG to 9 weeks after IVIG indicating a high measurement in the population at large adding to her system but no negative change in symptoms.

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free. But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow. I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well. We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past) Momaine, Can you remind us how her 3 IVIGs were spread out?

Let me try again. I just picked some random symptoms and markers for PANDAS and rated them according to the scale based on commonality in children with PANDAS, not lyme. My hope was to get this type of reference done by those knowledgeable about Lyme to apply the same type of ratings. So, examples of a 5 would mean over 90% of the children diagnosed with PANDAS exhibit separation anxiety. Are you say that high a percentage of children diagnosed with Lyme exhibit all those symptoms? What I'm getting at is that perhaps the questions should not be interpreted as "Can this EVER be a symptom of Lyme?" because we all have gathered the answer will always be YES. Perhaps the question should be posed in terms of likelihood of commonality symptom clusters.

Fantastic!!!!! What a wonderful way to start the weekend!!! Here's hoping 3 times is the charm!!!

Is it possible for those who are sharing their background knowledge about lyme disease presentation to be more discerning perhaps by utilizing a rating scale system? Something like: 5-Very Likely 4-Likely 3-Just as Likely as Unlikely 2-Unlikely, but possible 1-Very Unlikely, but possible 0-No association whatsoever Can we try this? Let's look at some symptoms or markers and see if this moves the discussion forward. Right now, it feels like those that are sharing their Lyme knowledge are lumping together 1-5, and if it is not a 0, then we hear "lyme chime." If I were going to do this for PANDAS for example, I might say: Separation Anxiety-5 Elevated CAM K-5 Handwriting deterioration-4 Significant history of positive strep rapids/cultures-4 Eating Disorder-3 ASO/DNAseB titer rise-3 Insomnia-2 Trichotillomania-2 Livedo Reticulitis-1 Suicide attempts-1 Tumors-0 Dwarfism-0 Please don't cyber-shoot me! It just seems like, perhaps, a frame of reference and perspective might help the conversation. BTW, my dd10 was one of like 2 or 3 kids I've heard of on this board that had livedo reticulitis and it went away with IVIG, so I would say based on what I've read posted that LR is very unlikely, but possible and related to autoimmune dysfunction.

Can you be more specific about what you mean by normal immuno work up? I thought no rise in titers post strep infection is NOT a normal immuno response, right?

You know that saying about..... if you roll around with a pig, even if you're not a pig, you'll still end up dirty every time? This woman is a pig. Deal with the staff and put on your stoic Ice Princess face around Porky.

What was the yeast medication?

Mary, Can you help me understand this? I thought the word from the NIMH meeting was that different infectious triggers to OCD/Tics/ADHD were acknowledged. It sounds to me like you are saying Lyme is synonymous with PITAND?? Myco-p is a bacterial infection like strep, but not from a tick. Haven't most been infected by myco-p before they get out of childhood? Reading all these info is so confusing. It sounds like ALL kids have had the "infections associated with Lyme/PITAND" but most children's bodies can process the infection and others (OUR KIDS) develop neuro-psychiatric symptoms. So doesn't that come back to the auto-immune issue rather than the X, Y, Z infection antecedent?

NeverGiveUp, I was reading one of your old posts (Feb. i think) where you wrote that a leading expert in IVIG was commenting on how difficult it is to get auto-antibodies out of the brain (stick like glue)and his thought was 2g//kg was the best shot. Based on your conversations and information gathering since that conversation, do you think this is valid? Did this expert comment on frequency? What is the rationale behind monthly and at what dose? It also seemed like he was saying you could go years without symptoms and then get triggered again?? Sorry for all the questions, but you seem to have a pipeline of awesome info! JAG

We have seen coverage for BCBS change from state to state, within state, company to company, person to person and even for the exact same person w/exact same codes and treatment approved the first time and denied the second. Unless you can find that it is specifically covered within your plans governing documents, it's quite the roll of the dice. For our dd10, we have Independence BCBS in PA. (We think) by mistake they covered one day facility fee for Oakbrook, but paid out $4550 which was a nice chunk of the cost. They did not pay the 2nd day facility fee, the cost of the Gammunex or Dr. K's fee. Well, wouldn't you know, Oakbrook isn't letting go of that money even though we paid them in full, up front. We have gotten several different stories out of them from "we need to wait 30 days" to they actually called Indep BCBS to see if it was a mistake and they were going to rescind the payment. Indep BCBS said technically they should not have paid the $4550, but they will not be rescinding the payment. STILL no $$$ from Oakbrook. Now they are saying since we only paid a $900 per day facility fee, that is all they will reimburse us and we STILL haven't even seen that for a May IVIG!!! I do not hold Dr. K responsible for Oakbrook's greediness; a doctor cannot be held responsible for the actions of the facility where they practice. But, we cannot deal with Oakbrook again which will limit what Dr. K can do for our dd.

Both of my daughters caught the molluscum virus on our cruise in August. My younger, non-pandas dd7 got them worse than my dd10, but they are not painful to either one. they are basically a small cluster of little warts that will go away on their own as long as they are left alone. My dd7 has them on the inside of her thigh and did scratch one open at first. The covered it up with a bandaid so she would leave it alone and prevent them from spreading. So far, a few have gone away and a few remain. The only reason our ped considered treatment was bcs she had "opened" one up, but since she has been able to leave them alone, we have opted not to treat.