Suzan

The vest has a new home. Thank you!

The vest has a new home. Thank you!

That is a great idea! I will look into that. Thanks!

Hello, I have been a long time member but have not posted recently. I posted this on the autism board but thought I'd post it here too. I have a very small heavy pressure vest that we no longer need and would love to donate it to a family who can use it. If you or someone you know would benefit from this vest, please send me a message. It is one of those blue wrap around vests (I can't find a picture of it) with weights. I had to sew some velcro on it because my daughter was so small she needed it even tighter than the vest would go. Thanks and HUGS to all!

Hello, I have been a long time member but over on the pandas/pans/lyme board. I have a very small heavy pressure vest that we no longer need and would love to donate it to a family who can use it. If you or someone you know would benefit from this vest, please send me a message. It is one of those blue wrap around vests (I can't find a picture of it) with weights. I had to sew some velcro on it because my daughter was so small she needed it even tighter than the vest would go. Thanks!

Hello, my dd who had 2 low dose IVIG before our Lyme diagnosis is still undergoing treatment for lyme. We recently did a vaccine challenge due to her low IgG and low normal IgA to see if she would qualify for IVIG through a CVID diagnosis but she reacted well to the vaccine and I believe she won't qualify at this time. She is stable and doing well on lyme meds (antiboitics, yeast meds and parasite treatment) but still, after all these years can't seem to come off abx without regression. I had hoped some IVIG might help but so far it looks like it won't be covered. She has lyme, bartonella and now tests positive for rocky mountain spotted fever.

I just came on to post the response to my mom and saw your post. She ordered after 11/22.... Welcome to 23andMe. At this time, we have suspended our health-related genetic tests to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process. We are continuing to provide you with both ancestry-related genetic tests and raw genetic data, without 23andMe’s interpretation. If you are an existing customer please click the button below and then go to the health page for additional information. If you are a customer who purchased before November 22, 2013, you will still have access to your health-related results. We remain firmly committed to fulfilling our long-term mission to help people everywhere have access to their own genetic data and have the ability to use that information to improve their lives. Upon entering the site, please confirm you understand the new changes in our services. I understand that 23andMe only sells ancestry reports and raw genetic data at this time. I understand 23andMe will not provide health-related reports. However, 23andMe may provide health-related results in the future, dependent upon FDA marketing authorization.

It could be the CBS mutation causing high ammonia levels. We got our results by getting the 23andMe test and passing it through genetic genie (thank you LLM and others!). One of my daughters has always had high levels of ammonia and this is the only thing that ever suggested why. My other daughter never got her ammonia tested but she has the CBS mutation as well so I wonder about her levels. "CBS Mutations CBS (cystathionine beta synthase) catalyzes the first step of the transsulfuration pathway, from homocysteine to cystathionine. Dr. Yasko considers addressing CBS mutations as first priority aside from addressing the gut. CBS defects are actually upregulations. This means the enzyme works too fast. In these patients, it's common to see low levels of cystathionine and homocysteine since there is a rapid conversion to taurine. This leads to high levels of taurine and ammonia. The NOS mutation can exacerbate ammonia issues. Furthermore, addressing CBS can help lower excessive levels of taurine and help detoxify ammonia. Dr. Yasko recommends that one supports their CBS enzyme for at least 6 weeks before starting methylation supplements. When one tries to take nutrients to support their methylation cycle before addressing the CBS upregulation, all the nutrients basically lead to nowhere. Instead of generating glutathione, the supplements may deplete the rest of the cycle....... The CBS Upregulation is a complicated subject and for more info, I suggest purchasing or finding the book Autism: Pathways to Recovery. Searching for other websites or online support groups talking about the subject may be of help as well."

We use 5-htp for calming effects at night or during the day but mostly at night. I have started using L-Theanine Calm-Plex with GABA and 5-HTP (Suntheanine®) and that is working well for us. We also use melatonin for bedtime sleep.

Thanks! Great link too. Good job!!

I will PM you some details.

Thank you both! And LLM, good to know about the estrogen! Have you found any other good supplements for CBS mutation?

My dd12 is doing great so I wanted to give a positive update to you guys. After starting to see a lyme doc in DC in May and getting her on a good protocol and getting her MTHFR diagnosed, she has changed dramatically at long last! Brief history..... first strep age 11 months old chronic infections throughout childhood (strep, sinus, chest, ear) sensory processing disorder (age 5) gluten intolerance (age 6) PANDAS (age 7) Lyme (age 9) separation anxiety, unusual fears, OCD, emotional outbursts, unreasonable, etc. MTHFR mutation (age 11) She still reacts to strep but she recovers more quickly. She sleeps in her room by herself now and I was able to move into the downstairs master bedroom for the first time ever. She gets herself ready for school in the morning. Takes showers, brushes teeth, puts her dishes in the sink, cleans her room. Things are so close to what I think is normal. We still have a ways to go on lyme treatment and I don't know what to expect with the strep reactions. Right now, hoping we can get through the year with no strep infections. She's on Tindimax, Alinia, Diflucan, Thorne Methyl - Guard Plus, probiotics, Yucca Root, and Dandelion Root and a couple other things I can't remember now. She will probably get an abx protocol change in a month or so. Might stir some things up.

I've summarized what I've learned to try to determine if this is a good place to start..... from your experience will you let me know if this sounds good or if I'l leaving something out or anything else important to check? CBS - relax on pushing animal protein for girls, add yucca drops/capsules and molybdenum (detox sulfites) and manganese (detox ammonia) (and stop supplementing with taurine for dd10!)... decide how I want to eat. COMT - if we seem to be doing OK with methyl b12 I'd rather not try to switch to hydroxy B12, adenosyl B12, and/or cyano B12. What would the symptoms be if we were not doing well on methyl B12? VDR taq - already taking vitamin D supplements MAO-A - supplement with 5-htp - we take L-Theanine Calm Plex by ProHealth (5-htp, gaba and L-theanine). I think this product will still be ok. ACAT - stabilize the gut..... we are doing vsl#3 or other probiotics for dd11. Hopefully that is enough. MTR/MTRR- already supplementing with methyl B-12 MTHFR - already supplementing with methyl B formulas (currently using Thorne Methyl Guard Plus) Question on CBS - we use Milk Thistle, NAC and ALA in our supplements for detox. Do you think it's worth it to try to find something else for detox that is lower in sulfur? Also, I need to look into all the other supplements we take to see if others are high in sulfur. Thank you for taking the time to check this out. I feel a lot less overwhelmed now after a few days of digesting the information and this breakdown of what the treatment might be.

LLM, that makes me feel so much better knowing you didn't hop right on board and completely restrict all the food I just knew we could not do that. But small changes and supplement changes, we can do that I'm sure. My diet though..... low carb, dairy, meat, eggs....ugh! Will re-read again tonight, maybe COMT since we have a lot of that going on. Susan

I thought I'd post the results here in case it's helpful. I understand that some of them there is nothing really known to do at this time so I can hopefully take some off the table! dd11 - homozygous mutations: COMT V158M COMT H62H VDR Taq MAO-A R297R dd11 - heterozygous mutation: MTHFR C677T MTHFR A1298C ACAT1-02 MTRR A664A AHCY-01 AHCY-02 AHCY-19 CBS C699T CBS A360A Me - homozygous mutations: VDR TaqMe - heterozygous mutations MTHFR C677T MTHFR 03 P39P MTHFR A1298C COMT V158M COMT H62H MAO-A R297R AHCY-01 AHCY-02 AHCY-19 CBS A360A dd10 - homozygous mutations: MTHFR A1298C COMT V158M COMT H62H VDR Taq dd10 - heterozygous mutations: MTHFR 03 P39P MAO-A R297R MTRR A664A CBS C699T

Hello! We have received our 23andMe results and as you probably know it's overwhelming! I've read through the heartfixer document and Amy Yasko's ebook and I have a concept of what is going on. I have a few specific questions but first and foremost, CBS of course and I am not happy about the dietary restrictions they are suggesting! Food at our house is a very difficult topic all around and I don't know if I can manage it. So, I thought I'd post here and see what you, LLM and anyone else has done for CBS mutation if you are dealing with that. We are all heterozygous for CBS. We have a doctor who will probably assist with the testing they recommend but we don't see him until November. I was looking at sulfur strips and wondering if there was a way to test ammonia at home. dd10 has always tested high for ammonia but dd11 and I have not been tested for it before. Do you think the pre-testing is important before we make any changes? I can list our other mutations as well if you might find that useful in anything you might be able to help me with. I have already started methylated vitamins due to our MTHFR mutations but in reading about CBS I am wondering if that was a mistake. I know for me and dd11 it has helped a lot already but not sure about dd10 yet. Thank you! Susan

LLM, I PM''d you. We got our 23andMe results back this morning. Pretty sure I have heterozygous combined MTHFR like dd11. Looking for tips on what SNP's to look up now and where to go next. Thanks!

PowPow, her homocystine levels (and her sisters too) were normal. I am sorry for the loss of your cousin but glad you tested negative! Everyone - thank you for your input on this! We see the hemotologist next week. Susan

We tested for the MTHFR gene mutation for her because her sister was tested at her lyme specialist office since she was not getting well. She was positive so her sister was tested and she came back positive too. Her neurologist who tested her said she needed a homocystine levels and factor 5 (V) test as a follow up. Otherwise, we would not have known about this or had any reason to test. I don't think it's related to PANS except maybe it's often found with MTHFR mutations and I think we may find a lot of that on this board.

Thanks! I've seen it that way but it didn't compute I guess since I just said "five" in my head. LOL. I spoke to a friend who is a family doc and he said we should also be aware when she is starting her cycle as it could be a factor there but otherwise should not be concerned at this point but educated.

One of my dd's have double a1298c and the other has one c677t and one a1298c. Since this can cause detox issues, I think they can stay sick longer than someone without. I believe even one mutation can cause a problem with detox, maybe just not as much. But I'm still learning about all this.

Just found out my dd10 has positive factor 5 mutation. I think this may be one that comes in one and/or two copies but I don't know the specifics of her result. Her neurologist wants us to see a hemotologist soon. If anyone has experience with this, can you let me know your experience and what you have done as far as doctor's visits, lifestyle changes, etc? I don't know what might be necessary at age 10 with no signs of blood clots as opposed to later in life. She also has homozygous a1298c MTHFR gene mutation. We are currently waiting for her 23andme results. I don't want to go over board stressing about possible issues this fines and only focus on the big ticket items that will help her get well at this time. Thanks!

Great, thanks you two. I will start another to see what comes up. This is what I get when I search 23andm3 and factor 5. I quickly read through but will need to read more..... https://www.23andme.com/health/Venous-Thromboembolism/ Due to my miscarriage and infertility history, of course I wonder if I have this issue too.

Hey LLM! So we are still waiting for our MTHFR results back (only in phase 3 so still a ways to go). In the mean time, dd10's neurologist tested her for factor 5 defect due to her MTHFR defect and it came back positive. They are referring us to a hemotologist and seemed very concerned. They don't know much about the defect except for what you read on the internet. To me, it does not seem like there is anything to do about it now but to just be aware for the future. Is this something you are dealing with and have more insider information? I don't know if it's a sign of some other issue or just what it appears to be which seems like a hemotologist at this time (with no signs of blood clots) is a waste of money. Unless maybe it's for education and future planning, preparation?? Thanks!