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momcap

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  1. Like
    momcap got a reaction from stacey in What Igenex tests? Will antibiotics affect results?   
    We were in a similar place as you are now - a PANDAS diagnosis, and antibiotics not helping enough, ready to consider immune modulating treatments. I wasn't sold on lyme, but searching for answers and considering it. I was especially worried about an LLMD, because our experience with EVERY doctor we've seen has been that they see things through their specialty. DS has been misdiagnosed with so many things. I didn't want to fall into that trap again. And his Lyme WB came back negative, so I was ready to move on. But one of the moms here encouraged me to test myself incase my kids have congenital lyme. I was willing to try just about anything before IVIG. So I guess I'm lucky that MY lyme test came back CDC positive, so there was no room for doubt. We practically ran to the nearest LLMD, which is a 12 hour drive into the U.S. Ugh. Please see my post from 2 days ago "Seeing Amazing Progress". We are truly seeing amazing progress in PANDAS DS! We retested through IGeneX and he's IGeneX positive, but not CDC positive. All 3 of my kids are positive via IGeneX.
     
    Our LLMD only asked us for the lyme western blot IgG and IgM, which it sounds like you've already done. INDs (which is a very weak positive in my opinion) on lyme specific bands and some positives sure sounds like a good reason to visit an LLMD, no matter how far away they are. Have you tried contacting ILADS to see if there's an LLMD closer to you? The LLMD would be the best person to suggest which tests, so you don't waste money ordering ones that aren't worth while. As far as antibiotics affecting results, you can contact IGeneX directly and they can give you that information. I know for the WB it doesn't matter.
     
    Good luck!
  2. Like
    momcap reacted to airial95 in Alzheimers/PANS Linked?   
    I have always found it interesting that the most common advice for family members of older folks is that if thy have any change in personality or behavior - to get them into their doctor for a full medical work up, but in our children, it's get them to the psychiatrist/pharmacy!
     
    Oh, and by "interesting", I really mean infuriating...
  3. Like
    momcap got a reaction from rowingmom in Does Pandas/Lyme go in cycles?   
    Wow, can I ever relate to your post! My DS10 also cycles, and on top of the cycling he has a brutal October flare every year. He was also a nightmare on Augmentin - so bad that he should have been hospitilized. We saw die off reactions with other abx, where he would get flu-like symptoms along with behaviour regression for a few days up to 2 weeks, followed by huge improvements. But his augmentin reaction was NOT a herx (IMO). It was all behavioural (mostly rage, aggression, and panic) with no relief for a month straight, and no later improvements. He had a similarly brutal reaction to Biaxin. Now that I'm researching methylation I realize he can't tolerate sulfa containing drugs or foods.
     
    I have a couple of thoughts on the methylation/MTHFR discussion in this thread, as I have been researching this like crazy the last couple of days since receiving our 23andme results. First, did you test for other mutations, or just MTHFR? We just got results on the 23andme testing, and it was a total eureka. Along with MTHFR and a whole host of other heterozygous mutations, my DS has 2 homozygous mutations of COMT. He can not tolerate any methyl donors since he already has too many floating around. Mentax sounds like a whole boat-load of methyl donors. It could be possible your DS also has COMT mutations. If so he would benefit from hydrox-B12, rather than methyl-B12, and anything that starts with "methyl" should be approached with extreme caution. Here's a little blip on COMT:
     
    COMT Mutations
    COMT (catechol-O-methyltransferase) helps break down certain neurotransmitters and catecholamines. These include dopamine, epinephrine, and norepinephrine. Catechol-O-methyltransferase is important to the areas of the pre-frontal cortex. This area of the brain is involved with personality, inhibition of behaviors, short-term memory, planning, abstract thinking, and emotion. COMT is also involved with metabolizing estrogens.
    COMT (-/-) individuals can usually break down these neurotransmitters efficiently, but COMT (+/+) individuals may have trouble breaking these chemicals down from impaired function of the enzyme. With a COMT + status, people may have trouble with methyl donors. This can lead to irritability, hyperactivity, or abnormal behavior. They also may be more sensitive to pain.
     
    Another thought, there are different types of MTHFR mutations, and from what I'm reading, the recommended treatments are not the same. My son is MTHFR A1298C + which, unlike the more common C677T mutation, does not lead to elevated homocysteine levels. It would be helpful to know which MTHFR mutations your DS has, and to treat them specifically.
     
    Final thought - according to the methylation heart-fixer document which LLM has posted here, it sounds like it is critical to address CBS mutations first. Any other mutation "fix" will only get bunged up at the CBS level, unless that one is addressed first.
     
    I'm new to all this methylation stuff, so I hope I got that all right. Hopefully someone more experienced will chime in if I'm off. I think it would be well worth the $ to run 23andme (only $99), if you haven't done so already.
  4. Like
    momcap got a reaction from philamom in I'm ready to jump out of the window. How can this be...   
    I want to chime in on the "bipolar" question. Warning, this is just my opinion. My DS10 is diagnosed with "mood disorder-NOS" which is a polite way to say he's bipolar, but too young to say so outright. I am really cynical about this and about the pysch profession in general. Psychiatry has distanced itself from medicine and I believe that is a tragedy. Pdocs look at a collection of symptoms, label it, and try to medicate the symptoms. There is no thought as to the underlying triggers, and the factors that actually CAUSED these symptoms. I wouldn't get too hung up on a psych label, unless you need it to get help/treatment. And while I am not exactly enamored with the psychiatric profession, I do think most PANDAS kids would benefit from the support of a PANDAS-knowledgeable pdoc on their team. The only problem is actually finding a pdoc who has a clue about PANDAS.
     
    As for bipolar, I was diagnosed bipolar as a young teen. Looking back now, I realize I had PANDAS. My "bipolar disorder" disappeared when I went on antibiotics for 2+ years for acne. When I grew past my pediatric years the so-called bipolar faded away completely and never came back. I think I was one of the lucky ones who outgrew PANDAS. I'm desperately hoping the same for my son!
  5. Like
    momcap got a reaction from peglem in I'm ready to jump out of the window. How can this be...   
    I want to chime in on the "bipolar" question. Warning, this is just my opinion. My DS10 is diagnosed with "mood disorder-NOS" which is a polite way to say he's bipolar, but too young to say so outright. I am really cynical about this and about the pysch profession in general. Psychiatry has distanced itself from medicine and I believe that is a tragedy. Pdocs look at a collection of symptoms, label it, and try to medicate the symptoms. There is no thought as to the underlying triggers, and the factors that actually CAUSED these symptoms. I wouldn't get too hung up on a psych label, unless you need it to get help/treatment. And while I am not exactly enamored with the psychiatric profession, I do think most PANDAS kids would benefit from the support of a PANDAS-knowledgeable pdoc on their team. The only problem is actually finding a pdoc who has a clue about PANDAS.
     
    As for bipolar, I was diagnosed bipolar as a young teen. Looking back now, I realize I had PANDAS. My "bipolar disorder" disappeared when I went on antibiotics for 2+ years for acne. When I grew past my pediatric years the so-called bipolar faded away completely and never came back. I think I was one of the lucky ones who outgrew PANDAS. I'm desperately hoping the same for my son!
  6. Like
    momcap reacted to ChrissyD in My husband's 23andme result...feeling overwhelmed   
    Yes momcap, the 23andme test is a very comprehensive test...all this was tested for $99 and included MTHFR and these other mutations. When you receive your results-- you'll need an app or a website to help you upload the raw data & interpret the results--- the 23andme website doesn't go deeply enough. As LLM suggested, we used genetic genie (http://geneticgenie.org/) ....we uploaded my husband's results and it gave me all his mutations with a brief explanation of each one. Please see the thread LLM referenced above for more detail.
  7. Like
    momcap reacted to JAG10 in Gotta share   
    I have a couple topics up about elevated titers and annual early Aug strep, but have to share good news that has me floating on a cloud.....
     
    My dd13 is at sleep away camp for the first time for 3 weeks, which is a miracle,I never could have imagined a few short years ago. For those of you who don't know the sleep away camp drill, no cell phones, only letters and my darling is not a fan of the written word. I did get a letter from her counselor that pointed out she is their model camper for tick protection which made me lol. These camps have photographers that post hundreds of pictures daily and that is your view into their world. Besides the posed cabin/group shots, my girl has been scarce!
     
    I've been writing her daily to try new things... Today I was elated to see pictures of my girl on a ZIPLINE!!!!! There were pictures of her climbing this tree that seemed to go up to the clouds, one with a big smile and green paint on her face from color day looking down over the platform and zoooooommmminnnnng down the ZIPLINE!!
     
    I'm so proud of her!!! I can only imagine the anxiety she had to overcome; she's very cautious, hates rollercoasters. God bless her soul! YAY!
  8. Like
    momcap got a reaction from Kathy4Him in igenix lyme testing   
    I'm not sure what their current prices are, but a few years ago I spent $600 on the complete lyme panel for myself, and when it came back positive (CDC positive too) I took my whole family to a LLMD. The LLMD ordered the western blot IgM & IgG only for $200. They all came back positive. So I feel like the complete $600 test was overkill in my situation and I wasted some money.
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