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23andMe testing


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19 replies to this topic

#1 llm

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Posted 13 March 2013 - 08:49 AM

So I got one kid's 23andme results last night. Haven't had time to digest it all yet, but after running the raw data through genetic genie (which is a free app that essentially produces the same report for you that Yasko does), two of the mutations that show up is are homozygous MAO-A and homozygous COMT V158M. In the report, it says

"When a (+/+) MAO-A is combined with a (+/+) COMT V158M mutation, one may be more prone to develop OCD, mood swings, aggressive and/or violent behavior, and personality disorders. Chronic infection can deplete tryptophan stores."

I thought that was pretty funny. After waiting 6 weeks, I get a report that tells me my child is prone to OCD and infection-triggered issues with serotonin. Duh...But at least now I know what to blame (and will be spending lots of time trying to figure out what to do about it). Interestingly, this is for DS, who has normal MTHFR. In fact, his COMT mutations suggests he may have trouble with too many methyl donors (and could be easily overmethylated with the wrong supplements). "This can lead to irritability, hyperactivity, or abnormal behavior. They also may be more sensitive to pain." It suggests to avoid methylB12 and instead use hydroxyB12 or cynoB12 and says he may do well with phosphatidylserine - which I started giving in december and has helped him with his ADHD issues.

You know, we bang our heads against the wall trying to figure out why our kids get hit with this stuff and react the way they do. yet in looking at some of this stuff, you start to see their bodies are just reacting the way they're programmed to react. It's not at all about "choosing" to behave the way they do. (however, ERP and CBT can alter a genetic response - so not saying thet get a free pass to misbehave or give in to compulsions). Interesting stuff. I'll be tied to the laptop for the rest of the week....


#2 momwithocdson

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Posted 13 March 2013 - 09:08 AM

Well, LLM, you're not your "average" parent, so even if the tests only serve to confirm what you've suspected all along or even knew, given your smarty-pants-research-and-research-some-more tendencies, I hope you feel validated! Maybe even vindicated, in some respects?! :P

Seriously, you're miles ahead of me on all this stuff, and I'm continually impressed by your resourcefulness and resolve! You must promise to write a book when you have this all sorted out, and I'll be happy to shove it under the noses of every doctor who's raised an eyebrow at me in that "Do you believe everything you read on the internet?," superior way!

Power to the Persistent Parents! :wub: :wub:
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Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#3 dcmom

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Posted 13 March 2013 - 09:09 AM

LLM- please keep us posted on what you find out. I have the courtegen test kits on my desk (waiting 'till mid year due to maximizing our insurance benefits), and am planning on doing that with Dr T. I am interested in the test you are speaking of also- and what the difference of the two is. Any info you can share as you look at the 23 and me and the courtegen would be helpful.

Thanks!

#4 llm

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Posted 13 March 2013 - 09:50 AM

Nancy - all I need to do is head over to a few FB pages or talk to a few other moms who've already done this and I quickly realize how much I still have to learn. My poor guinea pig kids :lol:

E - after looking at Jennifer's Courtagen report and comparing it to the 23andMe report, the genetic Genie report (which is like Yasko's) and a sample of a Prometheus report (another app that analyzes your results for you - cost = $2) - I have to scratch my head ans ask why Dr T is so in love with Courtagen. Unless your child has clear signs of mitochondrial disease, I don't see the value. 23andMe gave me a file that I imported into Excel and it has 960,000 individual SNPs (with maybe 3-7 SNPs per gene). It includes both regular dna and mitochondiral DNA and clearly has way more info than the average person wants or needs. But it's $99 out of pocket and I get the raw data, so as science progresses, I can re-run my data thru one of these apps 5 years from now and the SNPs they didn't know what to do with now might be informative in the future. Not trying to be an infomercial. I'm sure 23andMe competitors give similar info. And even with this info overload, there's still the big question of what does it mean/what do you do about it? But it seems that that's also true of Courtagen and so far, I haven't heard any of Dr T's patients say that he sits down and goes over this with you in any great detail.

Having compared the reports, I'd go with 23andMe - unless you do not want to know about anything non-pandas. DS's 23andMe report points out that he's at risk for heart disease and macular degeneration and noise-induced hearing loss. Well, I already knew that based on my own father's health issues. But it's still hard to see it in black and white. So if you're not interested in having certain fears confirmed, then I can see sticking with a specialty test like Courtagen. But I think having my son's bigger picture will be helpful. Because DD has MTHFR mutation and we have success with methylation supplements, I've been giving both kids a Thorne multivitamin that has methylfolate in it instead of regular folic acid. Figured, hey - with my family history, the methylfolate won't hurt him, right? Well, this is bad for my son because his above mutations suggest he should steer clear of methyl donating supps like methylfolate. I'll now put him back on his regular mutlivitamin with regular folic acid and cynoB12 and maybe his mood will improve a bit. (I can hope). So for me, having all this raw data is empowering. I will inevitably screw it up along the way. But probably no worse than I would without the info. So if you're the dabbling type, my vote would be for the $99 23andme test over Courtagen, unless there's a specific reason Dr T is doing this that I'm not aware of. JMO

edit - BTW - the Prometheus report you can run off of snpedia for $2 lets you see how you metabolize certain drugs, including ibuprofen, coffee, etc (you get the raw data froma co. like 23andMe then upload the raw date into Prometheus - not complicated)
sample report: My link

Edited by LLM, 13 March 2013 - 09:56 AM.

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#5 rowingmom

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Posted 13 March 2013 - 09:52 AM

Thank you so much for posting. It must feel great to actually see the reasons for the different reactions in your children. The fact that you had already figured out their individual responses to different supplements is amazing. You are truely a wonderful researcher/mom. Hat's off to you!

DD13 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.
2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.
2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever. 
June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34.  kDa 41++). CD57 18.  Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80.  CD57 16. 

April 2013 - Weaned from abx treatment at 80% improvement.  Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet.  Minimizing EMF exposure.

Sept 2013 - CD57 45.  

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved.  No flares with viral or other infections.  Herxing remains with changes in herbal protocols.

Nov 2013 - Clinical babesia diagnosis.  Improvement to 98% with addition of Buhner herbal protozoan treatment.  

Dec 2013 - ANA titers negative.  PANS symptoms resolved.  Regular classroom requiring no accommodations.  B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

Sept 2014 - Continued improvement with the addition of red root and bidens.  Resolution of EMF sensitivities with low dose cilantro tincture.  99%         

DS17 - Born 1996. No unusual symptoms.


#6 sss

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Posted 13 March 2013 - 10:04 AM

Just a thought from the peanut gallery -
I wonder if 'we' are altering our own genes and DNA
from chronic infections, vaccinations with toxic preservatives and animal and embryonic cells,
and geniticaly modified food-
which came first, the chicken or the egg.
(Carry on)
Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
Both of us have treated, dd9 had long break, now she is back in tx for Bartonella.

#7 smartyjones

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Posted 13 March 2013 - 11:02 AM

(and will be spending lots of time trying to figure out what to do about it).



seriously??!! it's all i can do to keep up with the problem sets!!


you're making 23 and me awfully tempting! especially b/c ds's copper is higher after being on zinc. does it have any info about genetic mineral metabolism ?

#8 llm

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Posted 13 March 2013 - 11:28 AM


(and will be spending lots of time trying to figure out what to do about it).



seriously??!! it's all i can do to keep up with the problem sets!!


you're making 23 and me awfully tempting! especially b/c ds's copper is higher after being on zinc. does it have any info about genetic mineral metabolism ?

Ah - forgot to mention that all this time I will be spending on 23andme results is coming from the chunk of time I had carved out for the X7.0 online course - which was kicking my a**. Last week, I struggled to answer the first few questions on the problem set and felt incredibly stupid. then I go to that problem with the micelle and liposome and my knees buckled. Then I looked at the next two problems, worth something like 30 points, where you have to build your own molecule - and I was like "um, I think I hear my mother calling me." I so wanted to push thru and stick with it, but after an hour of reading and googling yesterday on just that one problem, I still couldn't make heads or tails of what the answer might possibly be. Then an "omen"! I got an email telling me the 23andme results for DS were ready and I had just the excuse I needed to give up with "honor". Can't carve out time for both projects and figuring out DS is way more of a priority. I'll still try to watch the video lectures and skim the reading. It is fascinating (and Carbons in the Corners was very helpful in terms of understanding methyl groups). But I signed up thinking some smart people were going to teach me biochemistry - not that I was going to have to teach myself. IMO, you cannot answer those problems with just the videos and readings and I can feel stupid in lots of other ways without needing MIT brainiacs helping me along.

as for 23andMe - waiting 6 weeks for results s**ks and they have to re-run DD's sample thru a 2nd time b/c it didn't yield enough DNA the first time. So that may take up to another 2 weeks and if they still can't get anwers, we may need to send in another sample (no charge) and wait another 6-8 weeks. So that part stinks. But so intrigued with the data I have. I haven't gotten to the level of detail to know about minerals but I do want to see if I can get more info on DS's pyroluria. So I will be seeing if I can back into the problem by finding any research that identifies the SNPs that effect zinc utilization and then trying to see if DS has any of those SNP mutations.

It seems so strange to think that I'm hip deep in this stuff when "only" 4 yrs ago, I first came to Lats wanting to find out how to get rid of my kid's OCD and now, after learning about the pathogenesis of streptococcus, how the M proteins of lyme and strep bacteria are similar, molecular mimicry, the flaws of lyme antibody assays, ERP tools, methylation, transsulfuration....I get a report that says "your kid may be prone to OCD".

Edited by LLM, 13 March 2013 - 11:29 AM.


#9 juliafaith

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Posted 13 March 2013 - 01:23 PM

Just a thought from the peanut gallery -
I wonder if 'we' are altering our own genes and DNA
from chronic infections, vaccinations with toxic preservatives and animal and embryonic cells,
and geniticaly modified food-
which came first, the chicken or the egg.
(Carry on)

Interesting thoughts! Have been trying to get signatures to have GMO foods labeled in our state recently. ;)

Edited by JuliaFaith, 13 March 2013 - 01:24 PM.

Ds16: 5/10-PANS; 10/10 -lyme; Babesia [parasite]; Mico. & chlamydia pneu.; mold; T&A done; GcMAF done 12/13;  1st Strep Pos. 2/14.
Current treatment-    Maintenance:  Vit. D; Detox [Chia seeds];  probiotic;  Kidney detox drink-electrolytes/'M' Water/Galactose   PANS Support: (Myco Potent Immune Complex; Biocidin (anti-bacterial); Kidney tincture.
Prescriptions/Treatments:  thyroid; Desmopressin [Urinary tract support]; neurofeedback (weekly) Psychologist (bi-weekly);  hydroxyzine (antihistamine-sleep during flair); Exercise (finally!)<p> 


#10 philamom

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Posted 13 March 2013 - 06:51 PM

Nice job LLM. Look forward to hearing more.

Dd 13
Chronic Sinusitis since 18mths of age. Symptoms emerged with sinus infections and into remission with abx.
Severe Episode in March 2006. Dx with PANDAS May 2006. Three other episodes between 2007-2009.
2009- symptoms became chronic.
2010- dx with lyme, bartonella, rmsf. Positive Igenex Lyme. Positive Quest Bartonella and RMSF (igg).
2011- lupus flair, erythema nodosum, Pots, Positive Advanced Lab Culture w/ pic of spirochetes in sample. Positive Igenex

2012- endoscopy & colonoscopy

2013- Still positive for Lyme w/Igenex.. Positive Bartonella w/Quest

2014- Positive Advanced Lab borrelia culture, Positive Igenex, lupus flair, hypothyroidism

 

Treatment: abx & ivig


#11 tpotter

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Posted 13 March 2013 - 09:51 PM

Well, LLM, you're not your "average" parent, so even if the tests only serve to confirm what you've suspected all along or even knew, given your smarty-pants-research-and-research-some-more tendencies, I hope you feel validated! Maybe even vindicated, in some respects?! :P

Seriously, you're miles ahead of me on all this stuff, and I'm continually impressed by your resourcefulness and resolve! You must promise to write a book when you have this all sorted out, and I'll be happy to shove it under the noses of every doctor who's raised an eyebrow at me in that "Do you believe everything you read on the internet?," superior way!

Power to the Persistent Parents! :wub: :wub:



Yeah...right...those docs are still going to tell you to "stay off the internet!"

#12 Allie

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Posted 17 March 2013 - 11:26 AM

I did the 23andme test right when it was fresh on the market ( think it was priced $99.00) it was on a TV show.
I had done the Amy Yasko testing on my son, which was so much more
expensive, details. I still felt like I was treading water trying to understand the genetics.
Bought DVD's trying to learn it all. Turned out those DVD's helped me go to sleep fast watching them, I
realized what a great sleep aide they were. :lol:

Even though all these results may sound like it spells loads of troubles.
The good thing, is you can change the mapping through a good organic diet, sunlight, walking ( notice no heavy duty extremes).
Filtered water, some supplements,lots of rest and mindfulness living.

I have gone through so many things of cutting out, for the family and over time. And notice we don't miss them at all.
We're still working on things, but I see a glimmer of light, and not so many things to fix finally.

#13 toaksmom

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Posted 18 March 2013 - 11:04 PM

Sorry for adding another off track post. LLM, I hope you give us more of your methylation and genetic words of wisdom soon. My chronic Lyme and C1298A mutation induced OCD is making me add some details on the testing in hopes to help a fellow harried parent when they read through our posts looking for help in the future.

It is my understanding that when the 23andMe genome test was fresh on the market in 2007, the price was $999.00 back then so maybe Allie forgot to add the extra 9. The price was later reduced to $299 and just this past December 2012 the price was reduced to its current $99 price. The price of Amy Yasko's Nutrigenomic test is currently $495.

I've had one in-network LLMD charge me $130 out of pocket for each of my kids for only the MTHFR (677T and C1298A) blood draw test saying that Blue Cross will not pay for it and I've had another in-network LLMD include it in a Blue Cross paid for battery of tests. While it was nice to know whether or not we have the MTHFR mutation, it is obviously preferable to instead have all the mutations and issues the non-doctor self saliva submitted 23andme test will provide for $99. I wish I would have known this choice before.

When we found out that both our kids had a single C1298A defect we presumed it was from my husband because after 30 years of marriage, he is the one who has been more psych challenged. When we later found I was the one who had the defect, we thought we may have more genetic issues and sent away for both the 23andMe and Yasko tests for the four of us since our congenital Lyme DS19 has mild ASD that I'm hoping the details of the tests will help us sort out and supplement correctly and our DS16's OCD is debilitating. We are still waiting for the results. There is so little info on what to do with the C1298A defect that I'm hoping Yasko's recommendations will help. Contrary to what I've read about the C1298A and folate, my son's depression has lifted significantly on 7.5mgs of the expensive Deplin brand prescription L-methylfolate a day. His Dr. insisted he try it and it has really helped even though it is mostly recommended for the 677T defect. Although he had stopped taking it a couple years ago, my son was on 20mg of Prozac a day for about 6 years and it never helped him.

I, along with most parents first cut out the junk in our kids diets and lives and it does help to a degree but when the methylation pathway is not working the way it should, our PANS kid's immune systems and neurotransmitter production will also not work correctly which a lot of us parents have gratefully discovered thanks to great parents like LLM who share their knowledge with us.

As far as genetic mutations go, I don't think we can "change the mapping through a good organic diet, sunlight, walking ( notice no heavy duty extremes) Filtered water, some supplements,lots of rest and mindfulness living", unless those supplements specifically target and correct the inefficiencies the genetic mutations have created. But I don't think we will know which supplements are needed unless something like the $99 23andMe or the $495 Amy Yasko Nutrigenomic genetic/methylation pathway tests are done.

#14 llm

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Posted 19 March 2013 - 06:51 AM

TOaks - nice recap! I agree.
For those parents debating whether to do 23andMe or Yasko, do the 23andMe. You get 1 million snps (Yasko tests a few hundred I think) and you get your raw data downloaded into a txt or excel file, which you can put onto a thumb drive and put it in your safety deposit box and re-run it thru the apps that analyze that data in another 5 yrs when even more is known. You can also run your 23andMe data thru a free app called Genetic Genie (tho the author asks for a $10 donation) and you get a report that looks almost exactly like the Yasko report you get, saving yourself $495. The two things I have not gotten from Genetic Genie that you get from Yasko is your NOS status (part of the Krebs/ammonia cycle) and your SUOX status (part of your detox/transsulfuration cycle). But...23andMe does test about 50 NOS snps - just not the one Yasko looks at. So I'm in the painstaking process of looking at each NOS snp one by one to see if I can learn anything (which admittedly stinks). I'm told 23andMe does not test SUOX snps - at least the ones Yasko looks at - but I haven't gotten to that end of the cycles yet to dig.

In addition to running the Genetic Genie app to get a Yasko report, you can run your data thru another app from snpedia.com called Prometheus (cost is $2 or $5 depending on whether you download the .exe file onto your own PC (better security) for $2 or pay $5 to run it on their server (both Genetic genie and Prometheus claim to not keep any personal data). I had both the Yasko report and Prometheus reports in my hands in less than 15 minutes (tho I had to wait 7 weeks for DS's data from 23andMe and I am still waiting for DDs because they had to re-run it thru a second analysis and may not get enough data - may have to do the whole thing over for her and wait another 8 weeks - grrrrr). 23andMe is not perfect - their customer service gets lots of nasty reviews (I've not dealt with them yet). The long wait is infuriating. But in addition to methylation and some fun/quirky data about ancestry, I've learned about DSs risks for certain diseases, which is helpful. There are three disease risks that are locked and you have to click on two different screens to unlock them - your risk for alzheimer's, breast cancer and parkinson's. So if you don't want to know them, you can leave them locked.

Like you, my goal in doing the tests is to get custom info on supplements/diet. Going to our LLMD and hearing "SAMe works for some but not for others" wasn't helpful. Now I know that SAMe would be good for my DS and bad for my DD. I've learned that DD with the MTHFR mutation needs methylfolate and methylB12. But DS has mutations in the methylation cycle that leave him with too many methyl groups (an overmethylator), which I never suspected by looking thru Pfeiffer's under/over methylator charts. It's tempting to think, "oh both kids share DNA, so what's good for one is probably good for the other." But my kids, once again, prove they are opposites. Unlike DD, DS needs to avoid methylfolate and methylB12. He needs regular folate so he can use up methyl groups when his body converts folate into methylfolate and he needs extra supplementation of adeno and hydroxyB12 and needs to avoid methylB12.

More surprising is that I've been touting the benefits of tyrosine and tryptophan for depression and anxiety. According to the Yasko report, these are actually to be avoided by my son because of some mutations. So I stopped these for my son last week. Now, I do see some focus problems returning (I was using tyrosine to try to help his focus). I have not yet started adding the "right" B's (wanted to stop things for a week before I introduced anything new). So I'm hoping that by adding the right forms of B12 and some niacin, that will straighten out. The Prometheus report suggested that phosphatidylserine would be good for him - which I started giving in December after a year of internal debate. So it was nice to be told I was on the right track with that one and that his ADHD tendencies are genetic not just a PANS symptom. It will also help me with his diet, as I know which foods to encourage or minimize based on methylation issues. My goal is to reduce supplements to just the necessities. But at least now I have a custom roadmap.

The other benefit is that I now know for certain that DS is at higher risk for some diseases and lower for others (saving me a little energy in that worry dept).

I don't think I can protect him from everything or fix everything with supplements. But I do believe we can use certain supplements to bypass genetic roadblocks and avoid certain foods/supplements to prevent "over"dosing the body with certain amino acids and vitamins. This isn't the be all and end all, but it's a really valuable tool, IMO. And as I said, we now have data that isn't going to change. So today, science may not know what to do with snpABC. But in 5 yrs, they might know it plays a role in 123. So I think that's pretty cool. DH and I will be doing tests on ourselves soon - if I learned anything, it's that I can't assume that what's true for one family member is true for another. So more spit is in our futures.

#15 trintiybella

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Posted 29 May 2014 - 11:11 PM

I did the 23andme test but I don't see 1 million snps on it. Any tips?


My 14 y.o. girl had agitation, hallucinations, dialated pupils, OCD, severe confusion and  severe insomnia since birth. EEG's abnormal but no seizures. Sleep study showed RLS. Stared at TV all day from severe confusion. Tested positive for Bartonella and Lyme. Cam Kinase 166. No markers for PANDAS. Vitamin D3=11. A C677T Single mutation (C677T) identified. Migranes & vomiting. Tried: Bactrim & Minocycline, Bac. & Cipro. Bactrim & Doryx combinations. Tried many psych. drugs with horrible outcomes. Rages from most medications and supplements. The only thing that helped thus far is vitamin D3 for confusion.  She is now showering and can dress herself. Looks completely normal and can hold it together for an hour in front of people, then severe confusion overwhelms her and she gets impulsive and agitated. Spins in circles with confusion. Never really a lucid moment. You can not talk to her because she has so many racing thoughts and confusion. She is able to communicate once in awhile and begs for me to get her to sleep.  :( PS. has only had Hep. B. vaccine at birth.




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