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Posts posted by monarchcat

  1. I was the OP on this thread so I thought I'd pop back in. I haven't been on the board for a while so I didn't realize this thread had been bumped back up. We never did SSRIs or anti-anxiety meds. In a moment of absolute panic I convinced his dr to prescribe lamictil based on several posts on this board, but I never gave it to him. His therapist at the time didn't think he was a danger to himself so we just held on and tried to get through it. We were seeing a therapist (which he hated) and a adolescent specialist weekly for weight checks. As his nutritional status and weight improved, the body dismorphia and the depression lifted. Based on my own research on anorexia, I started him on zinc supplements, and that is the thing I think made the most difference in the long run with getting him over the anorexia and depression. He just sort of came through it. After doing 23andMe and a billion hours of reading/research I find I still don't understand most of the methylation stuff but we are making some progress. We haven't had a repeat of that awful 6 months at least. He currently takes Azith, lithium orotate, Magnesium, Zinc, hydroxy B12, CoQ10, Iron (he's a vegetarian), and probiotics. I'd like to tweak that list a bit but I'm scared to rock the boat. I did a HTMA on him a while back and there are some issues there, but I haven't had time to really figure it out and determine what else to add in. He also basically refuses to take any more supplements than he is taking now.


    We also tried Inositol in the past and it didn't help, probably because it's a methyl donor and he can't tolerate methyl donors, even though he needs them desperately (very confusing genetics). That could be why your son doesn't do well on it either.


    You might give lithium orotate a try, along with B12 and magnesium. If you haven't done MTHFR testing, probably try hydroxy B12 rather than methyl B12. Or try small doses of methyl B12 and watch to see if it makes him flare. None of it is a magic fix, at least for us. It's been slow going and just trying to get incrementally better.



    This all sounds very familiar. Our DS (14) has been battling with scrupulosity OCD for a few months now. However, in the last six weeks, it has been an all time high since our journey began with PANS back in late 2013. He is pretty much overcome with doubting his faith and doing a number of compulsions to "overcome" the obsessive thinking. It has become pretty much non stop the past few days and is starting to effect his work and ability to focus. We started our journey on azith for high myco p and my son initially responded almost immediately and we saw almost immediate relief and we stayed on for a few months and came off, using only for flares. However, it seemed that it was no longer effective when we picked it up this spring, so we switched to biaxin....did nothing for the 30 days we took it. We have now been off abx the past week or so...but have talked with DR about going minocycline or doxy. He wanted us to try a round of inositol dosing for 6 weeks before looking at going to new abx. Well, the inositol has done nothing over past three weeks and seems to make it worse. At this point, we are just trying to dampen things so that CBT can be effective. We are using NAC, vit c, probiotic, omegas, and multi vit. I don't want to go SSRI unless absolutely necessary and like earlier post I would be interested in something fast acting to take the anxiety down some to we can at least get through therapy sessions. Any suggestions or am I missing something that may need to be addressed?

  2. Never had a problem getting them from CVS dye-free.


    Really?? We usually use CVS for prescriptions but they did some looking (several months ago) and said they couldn't get dye-free azith tablets. I would think if one CVS could do it, then all could. Ugh. I think I'll bug them again. Do you happen to know the manufacturer of the tablets? Sandoz makes them, but that's the company that Rite Aid is telling me is backordered with no date for fulfillment.

  3. Does anyone have success getting azith pills in dye-free form? It's been such a struggle. My son went back on azith about 4 months ago and he absolutely refuses to take the ones with the red dye (not that I blame him). For a while I was able to get dye-free pills from Rite Aid, but they said they have mostly been filling the script by getting pills from other Rite Aid's that had them. They said the manufacturer (Sandoz) says they are on "backorder" with no date for when/if they will be abel to provide them again. I've called several other pharmacies, and Rite Aid was the only one that said they could even get them in the first place. The others said they were not able to order them.


    Anybody had luck with this recently? So frustrating... it should be getting EASIER to find dye-free alternatives these days, not harder!

  4. I would agree that it bears close watching. My son became vegetarian as part of a year-long progression of food restriction. Started with eating meat, but only grass-fed, organic, etc. That turned into vegetarianism, which progressed to restricting more and more "unhealthy" foods until it became full-blown anorexia, orthoexia, and body dysmorphia. In my son's case, his perfectionist/ scrupulosity ocd was at the root of it for the most part.

  5. I agree with checking titers first. Both my kids have PANDAS and we had a difficult situation recently in that my daughter caught chicken pox from someone in her class (she had one vax as a baby, but not the booster), my son (14) also had one vax as a baby, but not the booster. The state stepped in and said that he could not return to school for 2 weeks unless he had the booster immediately or showed immunity. We tested titers and he had no immunity. We made the decision to vax and he had no negative reaction at all... not even a mild flare. I was very relieved, but I knew I was rolling the dice. Every child is different.

  6. DS has been on treatment strength abx for approximately 5 years now. I'm not sure they are still doing anything but I'm nervous about just going off completely. He's currently on clarithromycin (biaxin). I'm wondering about moving to a prophylactic dose of something... either the biaxin or something else. Has anyone moved to a prophylactic dose after a long time on treatment strength? What abx do you use and what has your experience been? When he was young, he very clearly and obviously needed the treatment strength. He's now a teenager and we are addressing some other stuff, mainly MTHFR related. We are not 100%, but I'm not sure it's an abx issue anymore and I'm getting more and more nervous about long term, high dose abx....

  7. DS has been on it since late fall and I do think it's helping. I know for sure he has methylation issues and based on his SNPs I suspected he would be low in lithium. I just had his blood levels tested and his level came back undetectable, despite having been on the lithium orotate daily since November. I've now upped him to one in the morning and one at night. We've been using this: It's important to understand the dose. One 120mg tablet gives about 4 1/2 mg of lithium, so it is a teeny-tiny dose compared to the scary prescription lithium.


    I think it's worth a try. Start low and slow. Half a pill per day for a week or so, then a whole pill. If your dr will check blood lithium levels at least you'll have a baseline to know if he's deficient from the get-go. Yasko's talk on lithium is interesting: http://www.dramyyasko.com/resources/webisodes/lithium-connection-webisode/

  8. So a child in my daughter's 3rd grade class came down with chickenpox a couple weeks ago. My daughter had one varicella vaccine when she was a year old then was diagnosed with PANDAS at 3 1/2 and not vaxx'd further after that point. Can you guess where this is leading? Yep! We have chickenpox! Woot! Back when she was 3 1/2 she was diagnosed quickly and easily with PANDAS due to my 14 year old son already having paved the way, so to speak. She was on antibiotics for several years, and we just pulled her off last June. She has been doing GREAT, no issues at all.


    Before I knew it was chickenpox this weekend and just thought it was a virus (fever, runny nose, cough, no appetite, general malaise for two days before the blisters started) I had been giving tylenol during the day and advil at night. Today, once i knew it was chickenpox, I started Zyrtec (which she has been on in the past for hives) to help with the itching. I have some questions, though. I feel like I have been out of the loop lately so you guys may have some info that I don't know:


    1. I came across a thread that said something about no Nsaids with chickenpox. Anyone know if that's a true concern, and if so, why?


    2. She's done fine on Zyrtec for hives in the past, but anyone know if there's a reason not to give (i.e. MTHFR mutations, etc. I've done 23andMe for both kids but haven't looked at that issue specifically)


    3. My 14 year old PANDAS son... he is flaring the past couple days and I'm thinking he's reacting to exposure. I *thought* he had been fully vaxx'd for chickenpox since we didn't diagnose him til he was 8 1/2, but I looked at his records and he only had one vax as well. I have no intention of getting him vaxx'd at this point (though that is what the schools recommend). I think as it stands it's probably better that neither had the second booster, but damn... we actually HAVE chickenpox in the house now! He was diagnosed after several years with PANDAS so he is still on Biaxin. I also currently give him lithium orotate, hydroxy b12, oregano oil, COQ10, zinc, and iron. I'd love to keep him from getting the pox... if he has to miss school, my life will be heck on earth (he would consider missing school completely horrifying).


    Anybody have knowledge about dealing with the actual chickenpox virus, especially as it relates to PANDAS kids? eeek... I'm freaking out just a bit.



  9. It seems as though Yasko advocates for very low dose when possible, though some need higher doses, especially at first. I think ideally aiming for under 5mg of elemental lithium per day (and maybe very low, like 2mg or less for long term?). She has lots of info in the webisode in the link above (I finally watched it and it's really interesting!). The tablets I have are 120mg, which contain 4.8mg elemental lithium. We are doing 1 tablet a day right now, but I think I'll adjust that down in a few months, depending on lab results, though. Yasko definitely says to work with a doctor and check levels often.

  10. Monarchcat,


    Can you tell me more about Lithium and 23andme? Which SNPS should we be looking at? Thanks!

    I'm at work so don't have my notes/test results with me, but this link explains it fairly well: http://chronicdiseaserecovery.wordpress.com/2013/04/30/mthfr-and-lithium/


    Oh, that link also has a link to Dr. Amy's presentation on lithium! Haven't watched it myself yet, but bound to have great info!


    Amy Yasko's book "Feel Good Nutrigenomics" has a whole chapter on lithium, though it doesn't get terribly specific about SNPs


    It's not a "magic pill" for us, but I realize there never will be one. So many factors play into it all. I do feel it's helping, though, as another piece of the puzzle.

  11. I recently started ds13 (120 lbs) on lithium orotate. After investigation, his 23andMe results seem to point in that direction. I haven't had his blood lithium level tested yet, but will do so. As with anything, "low and slow" is the way to take it. I started him on one 120mg (4.6mg elemental lithium) per day. I felt that he probably reacted a bit to that dose so I backed him down to half a pill for a couple weeks, and now give him a whole pill once a day. Lithium assists with transport of B12 into the cells, which I think is a big deal in our case also. My son can't tolerate methyl B12 so I give him hydroxy B12 (this is suggested within 23andMe results, but played out CLEARLY in practice - he can't tolerate methyl donors).


    So, PR40 - it may be that by giving him too high a dose of the LO to start you kicked up some processes that caused the change in behavior and it may not have been the LO at all. He may need the LO, but starting at a lower dose and figuring out what is going on behind the scenes (i.e. with B12). That "hard to manage" behavior speaks of overmethylation to me as I've seen that in my own son. A few years ago, before I knew anything about genetics, etc, I tried him on a B-complex once a day. A very high quality complex comprised of the "methyl" forms of the B vitamins because those were supposed to be "best". He went OFF THE CHARTS angry, irritable, reactive. Even he said, "what the heck is wrong with me??" I now know that I overmethylated the heck out of him for those horrible few days.

  12. Thanks for the reply! Yes, vitamin D levels are low at the moment. Just got test results today actually and his level is 22. Strangely, though, they were up nicely when his depression/anorexia really kicked in last fall (his level was 74 at the time, which really surprised me, but it was after all the summer sun). He is homozygous for VDR-taq, which means we'll probably always struggle with D levels. I haven't been supplementing, but am going to start again.


    The other thing we CANNOT get rid of is mycoplasma. Tests came back for positive IgG and IgM. This has been a couple years now that we can't seem to get the numbers down with either azith or clarithromycin (and a brief 3 month stint on monocylcline).


    I tend to be very conservative with supplements, etc., but I'm going to have to up my game. Right now he's taking clarithromyciin for PANDAS, Zinc, CoQ10, Iron (he runs low as he's pretty much a vegan), 2000mcg Hydroxy B12, and saccaromyces Boullardii. And we'll be adding in 2000i.u. of D3 a day.

  13. When we started zinc a year ago we were in the middle of a major depression and eating disorder and ocd. Even with all that already going on, I felt like the first few days or so of zinc (15mg zinc picolinate) caused noticeable herxing. We just recently increased the dose to 15mg twice a day and I didn't notice any increase in symptoms this time. Is this a new supplement or an increased dose for your child? Then again, she could have been exposed to something and is flaring from that?

  14. Over the past year we've been dealing with major depression with ds13. Last winter was awful - depression, eating disorder, anger, etc. He's on biaxin for PANDAS and I started him on zinc, CoQ10, Iron (his levels were low) and hydroxy B12. We've done 23andMe and he has a bunch of mutations. He can't tolerate ANY methyl donors (yet symptomatically he's an undermethylator). I feel like there are big pieces of the puzzle to figure out with the MTHFR and genetic stuff and I'm working through that.


    He seemed to come out of the depression last Spring. He had gained weight and was eating really well (although still a strict organic/vegetarian). However, now we are sinking again. I am thinking about trying lithium orotate and am wondering who has tried it and what the results have been. I especially want to find out what brand and what dose you have used. The dosing seems confusing as some capsules are 5 or 10mg and some are 120mg. I assume the 5 or 10mg ones are just listing elemental lithium, but not sure.


    I *suspect* he may be low in lithium because I've read that lithium is necessary for getting B12 into the cells and he traditionally has high serum B12 levels, which is strange since he's a vegetarian (practically vegan) who only takes a 1000mcg hydroxy B12 sublingual a couple times a week.

  15. It looks like he has crazy strep. If his doctor won't treat - find one who will. That's ridiculous that a doctor won't treat an ACTIVE strep infection just because he's asymptomatic. Never mind if he doesn't believe in PANDAS, what about rheumatic fever, sydenham's chorea or glomerulonephritis? Surely he's heard of those? It sounds like your doctor is not going to be helpful. I would seek a doctor knowledgeable about PANDAS as quickly as possible. Good luck!

  16. Could it just be straight puberty symptoms, then?

    Definitely more than just puberty, though I'm sure puberty is wreaking havoc as well. This is severe depression, body dysmorphia, eating disorder (orthorexia heading toward anorexia). He won't play video games or watch tv or movies ever because he feels they are not good for him. He is obsessed with how "unhealthy, fat and lazy" he was in the past (he wasn't) and terrified that he will be that way in the future.

  17. Thank you so much for your advice. It sounds like a good plan. Interesting on the Sacc B. He's been on it for years (through the good and the bad) but I'm definitely willing to stop it and see what happens. I know inherently it's a bad idea to try to rush things. Really can't wait for the 23andMe results!

    I'd really consider stopping the Sacc Boulardis as a first step. My DS has horrible experiences with this one. It gives him OCD, tics, rages and hyperactivity. I know it's a "good" yeast, but I've tried it several times and get the same result each time. Try eliminating that and using a different, non-yeast probiotics for a week or so first. Then try the P-5-P while you wait for the 23andMe results.


    I know you're dying right now, but trust me, you'll be glad if you can wait on the results before introducing the methylfolate and methylB12. Stopping the Sacc B and introducing a new probiotic and P5P will use up a few of those weeks. You don't want to introduce the methyl forms of B9 and B12 without knowing for certain his MTHFR status. If you give these to him and he doesn't need them, it could introduce mood issues of its own. Also, when you start, consider using a 1/2 tablet of the metafolin. My DD9 takes only 67mcg every other day. She gets very angry and bipolar on a higher dose. Your DS may indeed need 400mcg or even more, but you do need to start low or you can just make things worse. Have some niacin on hand as well while you're in experimenting mode. If you overdose him with methyl groups and get a sudden metldown, 50mg of niacin can be a re-set switch within hours.


    My opinion, FWIW - stop the Sacc B now, introduce a new probiotic in 5-7 days, start the P5P in about 2 weeks. Give that 1-2 weeks and then when you get the 23andMe results, if he has MTHFR issues, introduce 200mcg metafolin + 1000mcg sublingual B12 every other day for 2 weeks and observe while you pour over other methylation results. Then go from there. Just my two cents and lord knows I've made my own mistakes, so I'm no final authority. But from my own mistakes, I can tell you that starting several things at once rarely works as hoped. It's cost me more time and I just end up having to start over, one thing at a time.

  18. I have another post right now about how we are in crisis - DS 12.5 has severe depression, body dysmorphia, and an eating disorder which has all developed over the past few months. We are in MA and I'm wondering if anyone has been to MGH or has investigated the new "PANDAS Clinic" (are they accepting new patients?). I was at the conference back in November and had mixed feelings when it was spoken about, but that was before DS nose-dived completely.


    I feel like MGH would definitley be the road to psych meds, and I've been avoiding that, but maybe it's necessary at this point.


    Just curious if anyone has any info on MGH, Dr. Geller, the PANDAS Cliinic, etc....

  19. I'm actually waiting for his 23andme results, but will probably be another month or so. I'm convinced he's undermethylated, but haven't wanted to push too many supplments without really knowing the big picture. I see interesting things about anoxeria and zinc deficiency. I have started zinc and magnesium over the past couple weeks, but no change (things are worse actually). I just ordered P-5-P: http://www.amazon.com/gp/product/B0019GXQK0/ref=oh_details_o00_s00_i01?ie=UTF8&psc=1 and 5-methylfolate http://www.amazon.com/gp/product/B001LQY9ZO/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1 and I have methylB12 at home that I can start as well (1000mcg sublingual)


    I know the rule is one supp at a time and "low and slow", but I wonder if I should start the above supps together since they work together?


    So - He would be taking:


    Saccaromycces Boulardii (probiotic yeast given w/ biaxin 2x day)

    Sam-e 400mg (200mg morning and 200mg evening)

    Zinc Picolinate - 15mg

    Magnesium ("Natural Calm" drink - about 150mg day)

    Vitamin D3 - 2000 i.u. as liquid drops on spoon or in drink

    B12 as methylcobalamin - 1000mcg sublingual (this would be NEW)

    Folate as 5-methylfolate - 400mg (this would be NEW)

    B6 as P-5-P - 50mg (this would be NEW)



    I WAS giving inositol but even at a low dose he complained of vivid dreams and he actually wet the bed for the first time in many, many years (he said every night he kept dreaming of using bathrooms in strange places lol)


    Any thoughts on that regimen? :-)


    And I will definitely look at that book on Myco-P and Bart... very interesting stuff.




    I'm not sure how much you've read on methylation, but if infection doesn't feel like the most prominent issue, and money is tight, then it may be something worth exploring. It's possible that SAMe is helping one part of the methylation cycle but maybe there are other cogs in the system that aren't moving smoothly.


    Dr James Greenblatt has a book about eating disorders where he focuses on mineral and vitamin deficiencies, particularly zinc. http://jamesgreenblattmd.com/


    It's possible that as he goes through puberty and his body changes at different and rapid rates, any deficiencies could go from moderate to severe, since the body is needing more of this or that as it grows. Suddenly, what was workable nutrition-wise isn't enough anymore and you see things fall apart.


    Tryptophan and 5-HTP can be helpful, but since you're already using SAMe, I'm not sure I'd combine them. Sublingual methylB12 might help but knowing his genetics would probably be a big help if you decided to look at methyaltion supplements. Despite the bad press on 23andMe lately, you can still get the test done for $99. The FDA prevents them from giving you reports, but the value of the test - running raw data thru genetic genie or livewello - is still there. This was my Christmas present to myself last year and made a huge difference for my kids.


    Good luck on the break! Been there. It still makes me shudder to remember "old times".

  20. Thanks for all the input, guys! Ugh.. this just sucks so much. He's miserable and I'm a stress-ball. He has had high myco-p numbers for a year and a half, but no real symptoms. He had a fantastic year last year. These past few months feel very different from past PANDAS episodes. It's textbook depression and eating disorder, which we've never really dealt with before. I'm wondering if puberty is changing the way PANDAS expresses itself (he's most definitely in puberty). We switched from Biaxin to Minocycline for several months to try to bring the myco numbers down, but I could see that he was heading in this direction even before we switched the med.


    I just don't know whether to ask for MORE abx (maybe a combo of some sort?) or what to do next. Maybe I need to take him back to see Dr. B and pay out of pocket somehow. Can't swing IVIG but definitely need guidance. I'm scared to death of psych meds, but will go that route if it's needed and can help.

  21. We are in probably the worst flare we've ever experienced. DS 12 1/2 has had PANDAS since he was at least 5, treated starting at age 8 1/2. We did 3 IVIG treatments with Dr. B 3 years ago with great succeess. Never back to 100% but really, really good. The past few months he's been sliding into major depression and an eating disorder. He has perfectionist OCD. In the past he's had minor OCD, mostly in his thinking so it was never really noticable or overt. These days he is completely obsessed with healthy eating, calories, reading labels, exercise, etc. He feels hopeless and worthless and is alternately angry, irritable and beligerant and then crying and desolate. In researching I found the term "orthorexia" which fits him perfectly.


    We used to see Dr. B, but don't have health insurance anymore that will cover him (and I believe I heard he's not accepting insurance anymore for PANDAS patients?). We are also four hours away from Dr. B. I do have a pediatrician who will work with me on any treatment course necessary but doesn't know a lot about PANDAS/PANS. He's also been seeing a therapist for several weeks who, while she doesn't know much about PANDAS yet, is willing to learn and works with many adolescents and uses CBT. Currently DS is taking biaxin (switched him back off minocycline last week to see if it would help), Sam-e, magnesium, vitamin D3 and zinc.


    I have resisted more traditional "psych meds" for obvious reasons, but I'm desperate to help him feel better. He does ok during school days, but weekends are HORRIFIC and we have just started the 2 week holiday break (and the morning has been beyond terrible). Do you think there is anything I can ask the Dr. for that would give him some relief? Is there any kind of fast acting anti-anxiety med, etc that won't backfire?


    I feel like we probably need IVIG again. I am not sure how to make that happen without insurance (probalby wouldn't be approved anyway). We are currently in a very serious financial crisis so paying out of pocket is not possible.


    I'm not sure how we are going to make it through this vacation at this point - something has got to give! I



  22. This just in - http://blog.23andme.com/news/23andme-provides-an-update-regarding-fdas-review/


    So.. it seems as though they will still sell the kits and then provide the ancestry results and raw data, but not the health-related report. Seems to me, the "good stuff" is all in the raw data anyway and can be interpreted genetic genie or livewello. So... not a great result, but better than a total shut-down, I think. Hopefully they can iron out the issues with the FDA. I think it's obscene that apparantly the FDA assumes consumers can't be trusted with their own health information, but that's nothing new for us!

  23. We are on year five of constant abx for my son (12 1/2) with no issues. He's been on augmentin, then azithromycin, then biaxin and now minocycline. My daughter (7) has been on azith and then biaxin for 3 years with a few breaks. She also has tolerated them remarkably well. Some of the PANDAS doctors have remarked that PANDAS kids in general tend to do very well on long-term abx without the issues that others may have. Not to say that's true across the board, but in our case, fortunately, it has been.


    Having said that, I HATE the fact that my kids need constant abx... I wish it wasn't so and I'll do everything in my power to track down other solutions, but in the meantime the alternative is so. much. worse.


    Sounds like youve got the probiotic thing covered pretty well. (I'm sure you know to give it several hours away from abx). We also give saccaromyces boulardii (probiotic yeast) that CAN be given at the same time as abx, which is helpful.

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