wornoutmom

If he has a positive ELISA he needs to be on antibiotics immediately for Lyme! The Elisa is very insensitive so if he gets a positive on that this test is most likely is sick with lyme. The fatigue is a lyme symptom but there are a number of different diseases that are lyme-related that can cause fatigue (not just Borellia . You need to see a doctor who is an ilads trained lyme specialist so that you get him on the right dose of antibiotics asap. Amoxicillin and Doxycyclene are the two most common choices for Borellia, depending on the child's age. Sometimes other antibiotics are used in addition depending on the symptom picture (ie., does he have strept or does he have symptoms of babesia, bartonella, mycoplasma, etc.). Babesia causes fatigue too. Does he have night sweats or leg cramps? Rib soreness or trouble getting enough air? Waiting for a confirmatory Western blot is unsafe. While you wait the lyme can multiply in his body. I am certain that no lyme specialist would wait to treat given his test results and symptoms. Lyme Mom I just got the labs on Friday afternoon. The first lyme antibodies test was 'positive presumptive". Then it says the confirmatory EIA test was negative. They cancelled the Western Blot. Now which result am I supposed to believe?? So confused!

DS14 son has been sleeping enormous amounts on and off lately. No, it's not the time change and seems beyond the teenage thing as well. For instance, fell asleep at 7 pm last night and slept till 6:30 this am. Night before same thing - but asleep at 8. Last week missed school saying he felt "bad" - slept until almost 1 pm. Week earlier he missed 3 days of school and spent most of the days home sleeping on and off on the couch. Did the same thing back in August before school started, and in Dec. he was tested for mono, as fatigue was one of his main complaints. We're still waiting on Western Blot testing to be completed after a positive presumptive ELISA, and I know that Lyme is associated with chronic fatigue, so that would make sense. But in the event it comes back negative, I just wondered if this sleeping was a symptom for anyone else??? If so have any of the docs talked about it with you?

Thanks so much for this post!!! This is the best explanation I've read! I want to print it out and tape it to my son's medical file at the clueless pediatrician's office!!!

Does anyone know the brand of IVIG that Dr K uses/recommends? We are headed to another doc appt. to discuss IVIG after my son's positive PETscan result, and while I've done research enough to know the various brands, I'm wondering if there is one in particular recommended or used more often for PANDAS? For those who have used IVIG - what should my son expect for side effects? Do you have any regrets about doing IVIG?

Host cell lactoferrin acquisition by M. pneumoniae is yet another possible means by which local injury may occur, through generation of highly reactive hydroxy radicals resulting from the introduction of iron complexes in a microenvironment rendered locally acidic by cellular metabolism that also includes hydrogen peroxide and superoxide anion (419).

This is my million dollar question right now, since my son's inflammation is confirmed now via PETscan. Can someone explain in layman's terms how IVIG helps reduce the inflammation?

I will second this! His involvement adds legitimacy beyond words....

Can I ask what concerns you about fish oil? Or is it just a vegan/vegetarian issue?

I feel like I AM going to medical school!! (ha ha) Unfortunately the #s don't make much sense to me. Our lab doesn't report numbers, just "negative" or "positive". We had positive IgG but negative IgM, indicative of either past infection or chronic infection (that results in no rise in IgM). Did they say if her Myco is current? Hi Rachel, I'm not sure. My daughters Dr. won't be in till Weds but the nurse told me her number was 3202 (700 is the norm) and 5.0 for myco. Does that make sense??? I should have went to med. school. Michelle

Buster: Thanks for the wonderful tv analogy. It made me think about the "sawtooth" reaction and the idea that it could happen throughout any given day if the dopamine is disregulated (and why, in our case, everyone keeps asking us about bipolar...)

Tired mom - were you only IgG pos for the MP or also IgM? We're on day 7 with mixed results so far. You gave me encouragement to think you're seeing "normal" on day 14... 2002 was our bad onset strep year too. Wonder how many others started then? Seems like I hear quite a few say they've been dealing with this for 7 years. Makes you wonder about the "certain strain" theory....

I look forward to the day we can just BE. Wow don't I agree with THAT statement! I wanted to ask - were your son's moods worse (all over the place)on the Omnicef that on NO abx? Yes, we are on the Biaxin for Myco, though we have no positive IgM so its kind of a shot in the dark. The rx is only for 10 days, but we have 2 refills - not sure what we'll do next. We havent tried Zithro or Augmentin - don't know if that would be indicated or not. Psych doc still wants to put him on Lamictal. We have an appt with local neurologist Tues to discuss IVIG, but we just read our insurance policy last night and it doesn't look like we'll get coverage even with the PET scan result. Sigh...I want off this boat!!! V I keep wondering if it means some things improve while others are getting worse! He definitely slept better on the Augmentin, but even that is beginning to improve as well. Your experience sounds somewhat like what we experienced on Omnicef. He'd be fine, then so angry, then laughing and silly, then crying because life was hard, then hugging me and loving me. It was crazy. It is the first time I was truly worried about his mental state. He was so up and down it was bizarre. I was extremely apprehensive about the Biaxin. Then I made the mistake of reading a website where people could post their comments and soooo many people HATED Biaxin because it made them feel crazy. I was convinced it was going to send him right over the edge, but thankfully it has brought him back to the best I've seen his moods since school started. He's funny but not super silly like he was for awhile. I've really missed his sense of humor. What other abx have you tried? Are you on a 10 day? I wonder if there is much difference between Azith and Biaxin. I'm assuming you are on Biaxin for mycoplasma? Or do you think it is intracellular strep? I had read so many times that switching around until you find the right one was key, but his pediatrician was so unwilling to try a macrolide because we don't exactly know what it is we are fighting here and he doesn't know much about PANDAS and had never heard of strep going inside the cell. I'm so grateful Dr. T. offered to talk with me. I have to laugh now to think our doc told me a month and a half ago that an abx wouldn't affect his mood, so switching around didn't make sense. He wondered if we should try a new SSRI since the only thing Zoloft did was make my son manic. I see where he is coming from, but boy howdy is he WRONG on that one. I hope it continues to work for us. I would be heartbroken if we backslide now. I'm am trying so hard not to let his progress or lack thereof affect me so much because he knows it does and it gives him the guilts. On the Omnicef, he'd flip out, I'd flip out and then we'd both be sobbing. He told me he thought I'd be happier if he ran away, which of course tore me to shreds. We talked about it again last night and he said he doesn't feel that way at all anymore. I hope things start to improve again for you. It is so hard to watching and wondering what is going on. I feel like I'm constantly rating his behaviors. I look forward to the day we can just BE.

So glad for you - hope this progress continues. Wish I could say Biaxin has been as helpful for us. We're on day 7 today as well. Like you, the first few days were an amazing shift in mood - played with a friend for the first time in months, seemed happy, handled a very stressful day at school just wonderfully. I was so excited. But day 5 he was so anxious in the am he could barely get out the door to school, called home with a splitting headache worse "exorcist episode" in several weeks. Did not go to school the next day and slept until 1 oclock in the afternoon! He was back to being whiny and agitated. I left him this morning in the same state to go to school conferences, and when I got back he had spent time on the treadmill, showered and was playin gon the ocmputer. So go figure!! That brings up the question: what is the definition of "sawtooth"?

Studies on toxicity show symptoms do not occur until ranges of 40,000 IU per day. My neighbor took 50,000 IU per week safely for years due to early onset osteoporosis.

PandasKid: You seem to have such a handle on this for being 16. If you don't mind my asking, I'm wondering how all this PANDAS stuff was explained to you? My son (14) is having a hard time grasping it all with all the uncertainty, and I'm pretty sure the more I explain the more scared he gets. Any words of advice for the mom of a teen? Thanks!! Im positive for Myco P. and when I went on Pred. my symptoms got ten times worse before they went away completely. So things will get better and hopefully the Pred. has longer lasting affects than they did for me. Good Luck and stay positive! It helps! PANDASkid

Vikie: I could use the link if you have it! Tomorrow we're on 1 week of Biaxin, and last 2 days have been BAD. Came home with a bad headache from school yesterday and had the worst "exorcist" episode (for lack of a better term) we've seen in a few weeks. Scary stuff. Today he couldn't bring himself to go to school and slept until almost 1 ocklock in the afternoon did go in for last hour) He is very "edgy". We have 4 more days of Biaxin to go.... Thanks! - Rachel

It takes on average 1000 I.U. of Vitamin D3 a day, over the course of a year, to raise your blood serum levels by 10 points. In the summertime, it takes about 15 minutes with no sunscreen to generate 10,000 I.U.s of Vitamin D3 from the sun. Vitamin D3 is a fat soluble vitamin that stores in your body year round. It is disipated by fat cells, so those overweight/obese need more. Also, the darker your skin, the less you generate naturally from the sun. So total intake depends on your tested blood levels, and also your geography. Darker skinned people living in northern climates tend to have the lowest levels, due to natural generation only 3-4 months of the year, and less absorption. The amount of time spent outdoors is also a factor. There are tastless, odorless D3 drops you can give your kids (or yourself) if swallowing pills is an issue.

Lynn and Laura: Very well said! I for one, appreciate everything you both are doing and have done. Now if someone could get my son's case in front of the "think tank" as a way to problem solve and look at the intracacies of this darned thing, I would plan the party, host the party and break out the unlimited margaritas for all!!!! -Rachel

Feeling a little discouraged and overwhelmed today. Started thinking back to Oct. when I started this renewed PANDAS investigation. Here's the rub: Ped 1: Sinus infection - go see allergist Psych 1: PANDAS - you need to see a specialist - I can only prescribe psych meds Specialist 1 (email) - PANDAS - you need IVIG yesterday Ped 2: No sinus infection - oops, xray shows there is, you were right - see allergist Allergist: no allergies, no immunodeficiencies - see ENT Specialist 2 (phone consult) - not PANDAS - see an immunologist as to why he's sick so often Psych 2: maybe PANDAS, but that's just a theory anyway - try new psych med Ped 3: Sinus infection is cleared, sorry he's getting sick so often, he may just be unlucky ENT: Chronic sinus infection - lets do surgery! Specialist 3: no, not PANDAS, maybe seizures? Specialist 4 (phone consult): yes, PANDAS - lets treat for Myco P (though we're not sure he has an active infection) Specialist 5: not seizures, lets do PET scan, but only do IVIG if its positive Specialist 6 (phone consult): sounds like PANDAS and chronic sinus reinfection from family. need to treat all of you but dont do surgery. Do you see how a person might go a bit nuts from all this?! All these doctors and all these different opinions. I feel like I'm spinning in circles. I have daydreams of an inpatient hospital I can take my son to, where I can check him in and stay with him (unlike the psych ward) while the developmental pediatrician, the nutritionist, the neurologist, the immunologist, the ENT, the infectious disease doc,the lyme specialist, the psychiatrist, the ERP therapist all take their turns evaluating my son and running their various tests. Then they meet in one big room together and hash it out, and come back to me with ONE diagnosis, ONE treatment plan. And then he stays there while the treatment is done so THEY can observe if their treatment is working, and rehash it together if it is not. No questions of who to trust, and who not to. No dead ends. (oh, and of course this fantasy hospital will be in Miami and have a luxury condo for the parents to hang out in next door while their child is treated, and daily massages to ease our stress will be matter of fact included in this hospital program that is, of course, fully covered by insurance) OK - now I really am dreaming. It just shouldn't be this hard...

computer logged my on as my dear hubby, but that last post was really from me..

Well this makes me feel a little less crazy about how I was jumping up and down at my ped 2 years ago when my son had months of persistent stomach pain that corresponded to his downward spiral that lead to panic attacks, school phobia, homebound services, major depression, psychotic rages and eventual hospitalization. When she ran every test she could think of and they came up negative, she told me he had constipation and his continuing stomach pain was psychosomatic...

So I was just told that in my lovely state of Michigan, all lyme titer tests are sent to the state lab, and they will not perform the Western Blot unless the titers are positive. State law. No getting around it.

Our script reads for 500 mg generic BiaxinXL 500 mg - 2 tablets in the morning. My son is balking at the size of these pills. Does anyone know if cutting them in half will affect the time release?. And would it work to give it 12 hours apart (one a.m. and one pm) instead of 2 in the morning, to help with any gut issues? Seems like I saw people giving Augmentin xr twice a day? Anyone know? Maybe I should call the pharmacy?

Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

My heart is breaking for you. I remember how horrible and helpless and guilty I felt when we had to admit my son to the hospital at age 12. Reading your post I could just feel the emotional rollercoaster you are on with having such hope and then the real situation in the here and now being so scary and horrible. I have ridden that rollercoaster for a very long time and know how hard it is. You are amazing parents for trying to get your son all the help you can in all the ways you can. I hope you can take some peace in knowing he is safe for the moment. You are in my thoughts...