mama2alex

The word "tics" appears zero times in this press release, while "OCD" appears 10 times. And burying it in "sensory and motor abnormalities" doesn't count, especially when immediately followed by the requirement that "Symptoms are unexplainable by a known neurologic or medical disorder" ("Tourettes" anyone?). Of course, no mention of Lyme. Its both fascinating and disgusting to observe the politics in action.

I tend to think low D is an absorbtion problem. The fact that he has chronic constipation could definitely be related. We give our ds D-Mulsion 1000 - 3 drops per day =3,000IU's. It's brought his D up some. He was never as low as your son - 24 to start - but our LLMD said he needs to be between 60-70 for optimal immune function to fight the bugs. I think at his last test he was around 50.

Our LLMD added MC-Bar1 and IMN-V some time ago. I can't tell you what difference they've made - we just trust our doc to know what ds needs.

This is an excellent documentary! I watched it on the Internet when they opened in up for free viewing for a week a few months ago.

I do know of someone who fits this description. They are dealing with Lyme Disease (PANS). You might hop over to the Lyme forum and post your question there too.

We use Custom Probiotics and Florastor.

Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced Conversion Disorder. After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. ) Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.

Fascinating discussion! Thanks for posting.

Thanks for the PM's and replies everyone! I will pass along these names and hopefully they will take their boys to be evaluated.

We went to dinner at our friend's Sunday night and his brother was in town, visiting from Pennsylvania. It turns out at least 3 of his 6 boys have OCD, panic attacks, and various physical health problems. He said one of them "had Lyme twice." The docs gave a couple weeks of abx each time and said it will always be in his system, but that's all they need to do. Anyway, I told him I'd get names of some REAL Lyme doctors near where he lives. He said he's near the Poconos, but I'm sure they'd drive a few hours to get help. If you have a recommendation, can you PM me? Thanks in advance!!

I would encourage all who have concerns about this paper to write to Swedo at swedos@mail.nih.gov. She needs to hear from the patient community as loudly as she hears from the "naysayers."

I saw no one had replied. I've never heard of this antibiotic - is there another name for it that folks might recognize?

My DS takes 15 drops of Burbur 2 - 5 times a day, depending on how he's doing. The LLMD said he has patients who take it every 15 minutes when they are really suffering. DS is 11 1/2, 75 lbs. I think there are restrictions/interactions with the Milk Thistle, but we've never used it, so I don't know what they are.

CDKMEK and MomtoJake, Migrating joint pain is a classic Lyme Disease symptom. A number of families on this forum have discovered that their PANDAS kids have Lyme and other tick-borne infections and many are seeing the PANDAS symptoms diminish as they treat for Lyme/coinfections (us included). I would recommend you both get your kids evaluated/tested by a Lyme-literate doctor (LLMD). Many of these doctors are seeing an increasing number of PANDAS kids and can treat for strep and any other infections that are involved with the overall health picture. If you go over to the Lyme forum here, you can ask more questions about this and get help finding an LLMD.

We use Burbur from Nutramedix. Also, lemon water is supposed to help the liver detox. We also use homeopathic drops, TD Glutathione and a combo of charcoal and clay in a capsule.

My ds is 11 1/2 and 75lbs. He was on 450mg Rifampin once a day for quite a while (off as of last week). He took a 300mg cap and a 15mg cap - we got them from Walgreen's. If my math is correct, that's 6mg per pound. So for a 98lb kid, that would be 588mg - not quite 600mg. In any case, I think you should be able to get the 150mg capsules.

I'm so sorry to hear that you're struggling right now. We just started Babesia treatment and it is not pretty. DS is extremely cranky/moody and sometimes just downright nasty. He said last night that he doesn't feel like himself, and doesn't like himself right now. It's very hard. And we aren't even on the full treatment protocol yet. I just wanted to mention that our LLMD specifically took our DS off Rifampin before starting Babesia treatment (he was still on it during the A-Bab challenge and things were worse than they are now). He said something about Rifampin irritating his system while they are treating Babesia (or something to that effect) - in other words, the two don't mix. So I would look into this before you start treating Babesia while he's still taking Rifampin. Also, he really upped our detox when he saw how the A-Bab challenge affected ds. And we were already doing a fair amount of detox. What does your doctor have you doing for detox? Hang in there. You will get through this!

We take Nutrivitamin Enzyme Complex from Integrative Therapeutics. Its very high quality with lots of vitamins, minerals, enzymes and probiotics in it. But you need to eat well too!

Hi everyone, I haven't posted much recently. I've been reading a bit, but mostly just focusing on life and plugging along with treatment. We recently did an "A-Bab challenge" on our ds to try to determine whether he has Babesia along with Lyme, Bartonella, Staph, viruses. We saw changes in his mood and sleep almost immediately, and once we got up to 10 drops twice a day, things got a bit ugly. He would cry at the drop of a hat, including at school in front of friends. He had diarrhea one night, flushed cheeks at bedtime, temp disregulation, increased anger, separation anxiety and OCD, and just generally very cranky. Its so hard to take a step backwards - he'd been doing so much better. I'd put off doing this challenge for several months because I was afraid of exactly what we're seeing now. But now we know something's going on with Babesia, which is better than not knowing! We saw our LLMD on Thursday, about 4 days into full dose of A-Bab. DS wouldn't cooperate with him for the physical exam (very easy basic stuff that he NEVER has a problem with) and was yelling and cursing (at me, not the doc) so the entire office could hear. The doctor had to get help to hold DS down while he felt his spleen, to make sure there wasn't any enlargement from the die-off. It was not fun, but probably good that the doctor witnessed first-hand a bit of what PANDAS parents go through. (When I mentioned this to him, he said he'd seen worse - he treated crack addicts in the ER in Chicago. So glad to hear it didn't look quite that bad! ) He was very sympathetic and understood this was a die-off reaction. So now we're pulling back for 10 days to focus on heavy detox, then we'll treat him with Malarone, Enula & Mora (herbals) and a much lower dose of A-Bab. He will remain on Septra and Bactrim, but the doctor took him off Rifampin. Of course we'll continue to focus on detox, detox, detox. Aside from this setback, he's been doing well. He had a lot of illnesses in the Fall, culminating with an appendectomy in November. But since the appendix came out, he hasn't been sick at all, which is amazing considering the time of year. He's restarted piano lessons, which stopped when PANDAS came into our lives, restarted after the first IVIG, then stopped again after he relapsed almost two years ago. He is doing better than ever, practicing without being told, and really ENJOYING his playing. I'm not looking forward to the process of treating the Babesia, but am looking forward to the possible results!

I'm so very sorry to hear about your breast cancer diagnosis. I hope the surgery goes smoothly and recovery is quick. A friend of mine mentioned a link between cancer and Lyme the other day, but I've never read anything about that. Has your LLMD mentioned it? Also, so glad to hear your daughter is making forward progress. I know what you mean about it being too slow, but any step forward is a huge accomplishment! Take care and good luck with the surgery on Friday.

We got our ERMI results back today and I'm wondering what it all means. Of course, I will see the doctor soon to discuss and probably call Mycometrics for their opinion, but I wanted to post here and see if anyone has any input. Group I total was 35.47 and Group II total was 25.57. The total score at the bottom was 9.90. Is that high? A few that jumped out from Group I (which I understand to be indoor molds) were Aureobasidium pullulans (210,000), Penicillium brevicompactum (2,100), and Wallemia sebi (2,500). I've only Googled Aureobasidium pullulans so far and it sounds like its related to lung problems. My son has had 6 pneumonias and has asthma, all starting after we moved into this house, so that was interesting. The doctor gave me the name of someone to call to look for the mold, and once I've confirmed that our results are high, I'm planning to call him. Any advice on the best way to proceed from those who've already gone through this?

Amazing! Thank you for putting this together!!

I agree with everything LLM said. You want to do this under the supervision and guidance of a knowledgable, experienced doctor, so one thing you could do right now is research the recommended doctor and make sure he/she has a good reputation. Also, if your husband has any amalgam fillings in his mouth, these will need to come out before starting chelation because they are almost 50% mercury. If he does have amalgams, you can look at the IAOMT (International Academy of Oral Medicine and Toxicology) website to learn more about the safe removal of these and find a dentist in your area who knows how to do it. Also, if this wasn't done with the first test, you'll want to do a provocation test at some point to get a better idea of what's in there. If his first test wasn't a provocation (with a chelator) there's probably a lot more in his body than the test indicated.

No, my son is always hyper. Seriously, every child is different. For us a herx might look one way, and for you it might look completely different.

Hi Wilma, We saw quite a strong herx with Cipro - within hours of starting. Joint pain, headache, hearing problems, and just feeling weird. It only last a couple of days, but we saw some good improvements with this one.