kakrpa
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Everything posted by kakrpa
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Thank u mayzoo! I just started valtrex - not sure what to expect. Am curious about Buhner protocol, but I'll see how this goes first. How is your dd doing now?? Did her symptoms improve as her numbers dropped? I started experiencing severe anxiety / pure-OCD at about 23 years old and have experienced it ever since. There was no real explanation for it either (and I'm now up to 4 diff meds for it). I'm 36 now and I'm finally maybe getting to some answers! Have you heard of others in a similar situation? I'm working with Dr T.-he's awesome! Thank you for your reply mayzoo...not sure who to talk to about all this so I appreciate your response.
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Hi all, I received some results back today that I think might shed some light on the severe anxiety / OCD I've been dealing with for...years. Anyone out there with similar results and/or experiences?? Coxsackie A IgG/IgM Antibody Coxsackie A7 IgG 1:800 High titer Neg:<1:100 Coxsackie A9 IgG 1:1600 High titer Neg:<1:100 Coxsackie A16 IgG 1:1600 High titer Neg:<1:100 Coxsackie A24 IgG 1:1600 High titer Neg:<1:100 Coxsackie B Virus Antibodies Coxsackie B Virus, Type 1 1:320 High <1:10 Coxsackie B Virus, Type 2 1:80 High <1:10 Coxsackie B Virus, Type 3 1:160 High <1:10 Coxsackie B Virus, Type 5 1:160 High <1:10 Coxsackie B Virus, Type 6 1:80 High <1:10 Immunoglobulin G, Qn, Serum 764 mg/dL 700 - 1600 IgG, Subclass 1 408 Low mg/dL 422 - 1292 M pneumoniae IgG Abs 549 High U/mL 0 - 99 Negative: <100 Indeterminate: 100 - 320 Positive: >320 Immunoglobulin E Total 3 (LOW END) IU/mL 0 - 100
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I'm researching OCD and came across this thread - I know it's quite dated by now. I was hoping Phyl, or anyone else, might be able to chime in on what's helped their children with OCD. My situation seems to relate more to Phyl's oldest son. No tics, but severe OCD. My ND suggested possibly needing to support hepatic glutathione pathway (with things like NAC, etc.). Wondering where everyone is at by now, and what treatments have worked/not worked.
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Awesome addition @jDuffner!
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In case you want to look through. http://latitudes.org/forums/index.php?showtopic=22539&hl=cannabis#entry173114
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Thank you Nancy! I belong to a private FB group called "Pyroluria" and was discussing this with another Mom on there. "Yes! Started it a month ago for me and my daughter. Both have Lyme and my daughter has ASD and PANS. I'm extremely impressed! Massive changes for the better in absolutely every category. We are using Cibdex brand at the recommendation of integrative MD." "As for dosing I couldn't find anything hard and fast so I took a bit of a shot in the dark. With the BB I started with 15-20 drops under the tongue about 3 times per day. With the Cibdex I use two pumps 3 x per day. The Cibdex has peppermint flavoring so it is much more palatable IMO. The BB oil tastes and smells like weed and that kind of bothered me but I'm extremely sensitive to scent and taste." I also read a post somewhere (maybe PANS/LYME latitude forum) from a mom using this to help treat her son's OCD and had significant improvement. Believe she was doing capsules as well with 30 drops in each cap 2 or 3 times a day. I believe her member name is t_anna. Might help to look her post up if u get back into that.
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Tourettes and Histamine...and methylation
kakrpa replied to LNN's topic in PANS / PANDAS (Lyme included)
Also, how do we know if this means histamine levels are to be increased OR decreased? That's what I have a hard time interpreting from the findings. Btw, that's interesting to hear vit c is an antihistamine. Wonder if that explains why my anxiety levels mysteriously increase whenever I attempt to add a vit c supp! Taking vit c I had thought was supposed to help w anxiety and not increase it. But maybe in my case this is why? -
Tourettes and Histamine...and methylation
kakrpa replied to LNN's topic in PANS / PANDAS (Lyme included)
I came across that same article citing an HDC gene defect as cause of Tourettes. Has anyone else tried increasing histamine levels? What were the effects - good/bad? -
Thanks Nancy! Would u mind sharing how much a dose was for your son? Also, what brand/kind did u use? I ordered some bluebird CBD oil which should be getting here soon. Not sure exactly what to dose, but I'll surely start low and go from there. Thank u!!
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No one?? CBD oil made from hemp...being investigated as a treatment option for various medical issues.
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Anyone here using/have used CBD oil? It's gaining popularity in the US as an alternative treatment for epilepsy, but is also being investigated for other conditions such as ADHD, OCD, anxiety, etc.
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Very interested in CBD for OCD! I saw Gupta's documentary as well and thought "ok, this is gonna be a BIG HIT!" Lol...pun intended. Curious if anyone else has tried this? @t_anna - how is your son? Results still positive?
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Helpful Threads & Links for PANDAS
kakrpa replied to Chemar's topic in PANS / PANDAS (Lyme included)
Interesting discovery into OCD/Tourettes: http://www.ocd.yale.edu/news/index.aspx?id=6484 -
Histamine Level - Has anyone checked this?
kakrpa replied to mama2alex's topic in PANS / PANDAS (Lyme included)
Thought u all might find this interesting: http://www.ocd.yale.edu/news/index.aspx?id=6484 Apologies if this has already been passed around.- 13 replies
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Curious to find anyone that has methylation issues in addition to a Chiari Malformation (sometimes called Arnold-Chiari Malformation). I have a Chiari-Malformation Type 1 (6mm with slight obstruction of cerebrospinal fluid). I have seen a few search results that post about Chiari being related to an under-functioning of the methylation system - which I find interesting given my MTHFR/CBS/MAO-A results. However, no sources were cited in what I came across, so I give it limited credibility. Anyone familiar with this, or have additional info/insight?
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Newbie here - help w 23andme results?
kakrpa replied to kakrpa's topic in PANS / PANDAS (Lyme included)
Also, in case this is of interest, here is one persons' story related to seemingly good success with addressing CBS via molyb and activated charcoal, sulfur restricted diet, etc. LLM, did your family try charcoal/magnesium and/or elimination of sulfur from diet? -
Newbie here - help w 23andme results?
kakrpa replied to kakrpa's topic in PANS / PANDAS (Lyme included)
Thank you so much LLM! This was the kind of experience/information I was hoping for!!! It's so great to hear from someone who understands this - it can be overwhelming esp when you factor in mutations whose treatments may be contraindicated. It's also great that you understand which forms are best (e.g., types of CoQ10), as I believe this is so important, and that you factor in supplements that have been recommended but are known to be estrogenic (possibly doing more harm than good!). I hadn't seen Swedo's paper, but have downloaded it and will check it out - thank you! Regarding CBS/MTHFR combination, I watched Dr. Ben's 90 min MTHFR video where he addressed this combo (albeit briefly) - you can view the embedded video here: mthfr.net. Thank you so much for relating your treatment experience. I ordered molybd a few days ago, and will give that a try as soon as I get it. I started taking SeekingHealth's HomocysteX Plus (includes 800mcg metafolin) a couple of weeks ago and am not sure I can tell a difference yet. Maybe I'll back off on that and address CBS/moly first for a few weeks, then re-introduce methylfolate (is HomocysteX Plus the right product? or should I stick with methylfolate? i.e., no B2, B6, B12, Betaine,etc.). I already take a separate B12/methylcobalamin sublingual separately. Good input on MAO-A+! I didn't really understand what this mutation involved, so it's good to know about the slower dopamine/serotonin breakdown. From what I understand, OCD results from an increase/elevation in dopamine levels (right?), so this makes sense. Funny that you mention avoiding AD's - I'm on two AD's at the moment (Citalopram and Wellbutrin) along with Buspar and Xanax. I wonder if I weren't on the two AD's, if my doc wouldn't have needed to add Buspar/Xanax! I don't want to be on all of this, believe me, but it's truly helped me to be in a good enough place to try and figure all of this other stuff out - so, it is what it is for now. I wondered about copper - I had been taking zinc (with copper) and read conflicting information about whether copper was good or bad to include for my genetic profile. So, I picked up a zinc only supplement last night - thinking I needed to avoid copper. This can be so confusing! How does one go about testing their copper levels?? -
Hi all, I'm a 35yo female, and have been dealing with OCD as an adult - since I turned 23. I don't know what caused/triggered it, and I was never like that before in my life (tendency to worry, but never to that extreme/clinically). I've been researching OCD/methylation/genetic testing and am also getting tested for strep ABO's (waiting for results - the more I learn about PANDA's, the more I wonder if strep was my "trigger" at 23 as I remember being very sick around the time that this OCD began). For those familiar with, or who have done the testing, I am very curious about the genetic angle to the OCD component. Anyone out there whose genetic results are perhaps somewhat similar to mine below? Just hoping to find someone who might relate symptomatically/genetically and if/what treatment was decided because of their results. There's so much to consider from these results - e.g., with Hetero A1298C you would think to supplement folate, however, if complicated by homo CBS A360A (which interferes with A2398C somehow) folate may actually worsen symptoms, I believe. Please don't take the previous statement as 100% truth as I'm trying to recall exactly how the genetic combination works and don't want to mislead anyone! Just trying to give an idea for factors involved in approaching treatment. Would love to hear from anyone who can relate, or knows a thing or two about the genetic angle! Summary: Hetero A1298C, complicated by homo CBS/BHMT2,4, and hetero MAO-A. Homozygous: VDR Bsm rs1544410 TT BHMT-02 rs567754 TT BHMT-04 rs617219 CC CBS A360A rs1801181 AA Heterozygous: MAO-A R297R rs6323 GT MTHFR 03 P39P rs2066470 AG MTHFR A1298C rs1801131 GT MTRR A66G rs1801394 AG MTRR R415T rs2287780 CT BHMT-08 rs651852 CT SHMT1 C1420T rs1979277 AG