LNN

Any adult teeth pushing in that could be causing pain? Any allergy or sinus issues. I know you said bottom teeth, but sometimes my bottom molars hurt when I have sinus issues. Can't explain it but it happens. Hope the DDS goes well!

Hugs - FWIW - we too have been dosing pepcid. It does help. But I'd rather get to the root of things. We've also been doing zyrtec for a dry cough but it doesn't seem to be helping much (whereas it helps a lot when it's really hay fever in the spring). Our LLMD felt it could be either mold (from AC or just the seasonal kind in the environment) or gut yeast or both. So we started the Byron White A-FNG today and will do that for a few weeks. Then consider enhansa. He doesn't want us to add more than one thing at a time or it gets murky. But I wanted to know if this was a keeper or something to pass on. Thanks for the input!

I just posted on the Pandas forum about Enhansa, which our LLMD just suggested for DD as both an antifungal/yeast and an anti-inflammatory. You may want to follow any responses - it may be an alternative to the ibuprofen. Like Nancy, we reach for the motrin when things gate bad and see quick (w/in 20 min) results. In bad patches, we'll use it 2-3x day but usually only for a week or two at the most. The Enhansa, if it works, would be a safer option, esp. since one supposed benefit is that it detoxes the liver rather than adding to its burden.

DD has been doing really well for a few months, responding to methylfolate and other supps. But mood issues and GERD started creeping back a month ago and got pretty bad starting last week. We saw our LLMD yesterday for a follow-up and he immediately suspected yeast/fungal (she spikes in symptoms every summer, prompting an endoscope 2 yrs ago that was normal). He's seen a number of patients lately with fungal/mold issues. There's high mold count in the air plus last week everyone cranked up the AC (a good way to blow mold spores in the AC thru the whole house) and holed up indoors. Long story short, he recommended a Byron White tincture for immune support to help with the mold toxins and Enhansa (which is pure curcumin). I've seen Enhansa mentioned here before - can anyone share their experiences with it? Is it worth using?

I found this through another group I belong to and it seemed like a great solution for my DS who still struggles with tying laces. He's old enough now that it's getting harder to find velcro straps in his shoe size, as most kids his age have mastered laces. So if you're in the same boat... http://www.u-lace.com/ DS goes through shoes every month (tho he denies using the toes of his shoes as brakes when he rides his bike - yet, the toes are always where the damage is...hmmm). So hopefully one pair of laces will outlast many pairs of shoes...

Here's an article by Dr Nicholson that explains his theory on Gulf War Syndrome when it appears in soldier's families http://www.greatplainslaboratory.com/home/eng/PhysicianReference3.pdf- it's been awhile since I've read it but I recall that he speculates that the vaccine itself is contaminated with mycoplasma and his work specifically focused on the strain called mycoplasma fermentans. here is his treatment recommendation: http://www.morgellons-uk.net/?p=467

JMO, as there's a lot I don't know...the MTHFR gene sits at a fork in the road. Fork 1 oversees: homocysteine => cysteine => glutathione Fork 2 oversees: remethylation of methylfolate/methylB12 => methionine => SAMe => seratonin So if homocysteine levels are fine AND no clinical issues with seratonin, then I personally wouldn't supplement. But it is something I'd monitor periodically, particularly after puberty, in the year prior to trying to get pregnant, and in mid-life and after, due to the role MTHFR plays in miscarriages, neural tube defects, heart disease and stroke. But for a younger child, if the homocysteine levels and the seratonin related behaviors are ok, I'd probably just monitor once a year or re-test if something seemed to change. JMHO. For my DD, we supplement because it's helped significantly with anxiety/mood swings and we have major family history with many, many homocysteine related health issues. But if you don't have either, then I think it becomes more discretionary. DCMom- Here is an opinion from an MTHFR guru: http://mthfr.net/mthfr-mutations-are-more-than-high-homocysteine/2011/09/20/ He recommends testing S-adenosylhomocysteine (SAH) rather than relying on homocysteine. But I think in a child who's in remission like your DD, I'd still take a slow/low approach and just be aware of potential issues as she matures.

DeeDee - that is so awesome!!! The pyroluria stuff is amazing - I couldn't believe the change in my son. So many years, so many intense and expensive procedures...and a stupid zinc/B6 pill ends up being the thing that does the trick. I am sooo happy for you and DD! I've been taking time away from the forum for my own mental health, but as you can tell, mention MTHFR or pyroluria and I can't help myself. I do want to mention that for those who have these issues, treatment can bring incredible results. But I don't want to sound like it's everyone's answer. 20 people may get great results from IVIG and someone reading may feel compelled to do it for their child and be horribly disappointed (and broke). Likewise, not everyone is going to benefit from methylation supplements or pyroluria treatment. But they're such inexpensive tests (relatively) that I think it's well worth looking into and addressing if indicated. Wishing your whole family a much deserved carefree summer!!

No, but am going to look thru this list tonight. DD sees our LLMD on Tuesday and she's having GERD issues and allergy issues again. So I'm kinda stuck on which way to turn (don't think infection is an issue). I've been looking for test ideas and this list is a good place to start. Am thinking we're missing a piece. For your DD, I think some of the tests you could skip - e.g. the biopterin - since you know chronic infection is a component. Have you tested for metals yet? I think I'll print out this list and run it by our LLMD. I'll let you know if the conversation goes anywhere.

JMO, as there's a lot I don't know...the MTHFR gene sits at a fork in the road. Fork 1 oversees: homocysteine => cysteine => glutathione Fork 2 oversees: remethylation of methylfolate/methylB12 => methionine => SAMe => seratonin So if homocysteine levels are fine AND no clinical issues with seratonin, then I personally wouldn't supplement. But it is something I'd monitor periodically, particularly after puberty, in the year prior to trying to get pregnant, and in mid-life and after, due to the role MTHFR plays in miscarriages, neural tube defects, heart disease and stroke. But for a younger child, if the homocysteine levels and the seratonin related behaviors are ok, I'd probably just monitor once a year or re-test if something seemed to change. JMHO. For my DD, we supplement because it's helped significantly with anxiety/mood swings and we have major family history with many, many homocysteine related health issues. But if you don't have either, then I think it becomes more discretionary.

Yes, you can check coxsackie titers. Quest lists three titer tests on their menu - here's one of them http://www.questdiagnostics.com/testcenter/OrderInfo.action?fn=37477.html&labCode=NEL You can also PM SFMom - this test had significance for one of her kids and she has more info on it than I do.

Tiffany, The Band 31 makes me go "hmmm" - but you need to put it into the bigger clinical picture. Since DD just had IVIG, this will be hard to assess. So I guess I'd keep an eye on things. If this last IVIG gets her to a good place and she stays there, then just keep it in the back of your mind. But if 8-12 weeks pass and she starts slipping again, give the Band 31 a little more weight. PANDAS and the neuropsych symptoms of lyme overlap enormously, at least in my experience. So for now, it's something to keep an eye on, maybe read up on lyme a bit in the event you recognize a few symptoms that didn't fit neatly into Pandas (e.g. muscle pain, headaches - stuff that you may have dismissed as too vague). If you get tired of reading about Pandas, pick up a copy of Cure Unknown by Pam Weintraub. You'll see eerie similarities between lyme wars and Pandas wars. But for now, with the IVIG so recent, I think this becomes a wait and see thing. JMHO. Laura

A person with a C677 mutation can have "normal" blood levels of folate and/or B-12. But with this mutation, they cannot convert (methylate) that folate (using B12 as a co-factor). At the point in the cycle where folate is methylated, there's a fork in the road. Based on the body's needs and/or genetic abilities, one fork re-methylates folate (with B12) back into methionine and then into SAMe and eventually seratonin. The other fork takes the homocysteine that's created by this process and ideally converts the homocysteine into cysteine and then into glutathione. The question for people with a C677 mutation is whether the body is able to efficiently complete both of these steps/forks or if it just lets unmethylated folate build up in a big traffic jam. You could have tons of folate in your blood. If you're unable to methylate that folate into methylfolate, that folate is useless. People with two mutations of C677 (homozygous) only perform this methylation process at about 10%-20% efficiency. People with one mutation (heterozygous) perform this process at approx. 40-60% efficiency (estimates vary). So homocysteine levels could be high even if your folate and B12 levels are normal. You should measure homocysteine directly. The key for those with C677 (and this is not a Pandas mutation - 40% of the population carries at least one mutation) is to take methylfolate, not regular folate (and possibly avoid regular folate, since your body isn't able to process it). By taking methylfolate supplements, you've done the methylation process outside of the body and are providing the needed end result (methylfolate) which can then be used properly by the body. Nancy, personal opinion - I don't think 400mcg is too high for your DD. However, I think a doctor might suggest a lower dose of methyl B12 - maybe 1000-2000mcg but every day. You want to keep things steady and give both methylfolate and methylB12 together, rather than days apart, with high and low troughs of B12. Maybe start with 400mcg methylfolate+1000 mcg methylB12 for a few weeks. Then increase to 800mcg methylfolate and 2000mcg methylB12 (but obviously run this by the doc). Be aware that a log jam has been building in your DDs body. By supplying the needed methyl forms of folate and B12, you'll be lowering the level of the log jam. But this may cause a herx-like response intially. You have a lot going on and it may be difficult to tell what's what. To reduce the chances of ill effects, build slowly. For the first few weeks, you may even want to split doses and give half a dose in the morning and the other half in the later afternoon (B12 gives energy, so probably not something to give at bedtime). If you go slow, you may not even think it's helping right away. But if you're so inclined, you could discuss testing homocysteine levels as a benchmark and then re-test after a period of time to see if that drops. Many doctors are aware of how homocysteine increases risks of heart disease, stroke and macular degeneration. Few understand the impact on mental health/seratonin. But your DAN should be of some help. Also bear in mind that months down the road, as methylation improves, any treatment dose of an SSRI may need to be adjusted downward, as the body may be making more seratonin and the need for reuptake inhibition may be less.

I think your son is in good hands with Dr L and you'll need to see how the T&A and other possible treatments go. It sounds like he's been able to recover from Pandas flairs, so that's promising. I highlighted the parts of your daughter's story I wanted to comment on: 1. Severe infections - it sounds like your DD (darling daughter) really struggles to clear infections. Sometimes our kids have poorly functioning immune systems. Some find immune deficiencies (by testing various levels of immunoglobulin known as IG panels and IGg sub-panels - which are blood tests an immunologist or Dr L could order). Some kids are zinc deficient. There's an excellent book you may want to get called Answers to Anorexia http://www.jamesgreenblattmd.com/ which explores how eating issues as well as infections can be tied to zinc deficiency. My DS (darling son) suffers from a condition called pyroluria which is a genetic zinc/B6 deficiency. Here are two good resources: http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on Pg 3) and http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf. My DS struggled with Pandas and lyme and could not achieve remission until we finally found and treated the pyroluria. He responded within days - he was a different kid. In addition to the sinus and pneumonia infections, you mention mono. The virus that causes mono - epstein barr virus (EBV) stays in your body forever. In the same way a childhood bout of chicken pox can resurface as shingles in adulthood, EBV can resurface as well. You may want to test for titers for EBV, herpes viruses and cosackies virus just to see whether a virus seems active or could be contributing to her issues. While some docs say you can't treat viruses, there are anti-virals available and L-lysine is an amino acid found in foods and supplement form that can be effective in reducing a viral load. Finally, new attention is being given to the role of viruses and infections in schizophrenia. Here's a great article from the March 2012 Atlantic Magazine http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/ that talks about how a virus can be transmitted from cats that alters lots of human behaviors and risk taking. 2. Allergies/Toxins - there are several older discussions on this forum on how lowering histamines seems to help our kids. Some have found that using pepcid (which blocks a certain kind of histamine) helps both stomach issues as well as behavior. Be aware that singulair can cause neuropsych issues. The body rids itself of toxins using something called the transsulfuration pathway. This "waste management system" is highly dependent on zinc and on glutathione, which is the body's master antioxidant. So doing things to help the body detox can also be very helpful. You can google oxidative stress or search the lyme forum for many discussions on this topic. When a body is killing of bacterial infections, the bacteria release toxins which can cause as many health and neurological issues as the original bacteria. So it's something to look into if chronic infections are playing a role. (look into herxheimer response or "herx" for background). Finally, mold can trigger or compound a number of health and psych issues. This too has been discussed in depth on the lyme forum and if you want to learn more, I'd recommend www.survivingmold.com as a place to start. 3. Methylation - I can go on ad nauseum about this topic. Some of our kids have a genetic mutation that makes it hard for their bodies to process vitamins (folate and B-12) and this results in a chain reaction of problems that have far reaching health consequences. Among them is an inability to correctly produce seratonin as well as properly get rid of toxins. Addressing this genetic issue has made a huge difference for my DD, who suffered from some serious bi-polar behaviors. If methylation is a problem, SSRIs may not be as effective. Also be aware that PANS kids are often super-sensitive to SSRIs and dosages of 5-10 mg work much better than typical hgiher doses of 50-75mg that many docs are used to prescribing. 4. Steroids - if your DD has a chronic infection, longer term use of steroids should be avoided, as steroids suppress the immune system. But for her current treatment, there's no hard and fast rule as to what to expect. Some people see immediate relief while others see relief a week or two after stopping. Some see no effect. Responses seem very individual. IMO, steroids are an effective treatment for a crisis or to head off what looks like an impending crisis. But you can't use response to steroids to confirm or rule out PANS. Only that a positive response suggests that inflammation was contributing to your problem. But what's triggering that inflammation still needs to be addressed (bacterial infection, mold, autoimmune responses, allergies - all trigger inflammation). I know I've thrown a ton at you and haven't gone into much detail on any of it. I know in the moment, you won't be able to look at all of this. But I wanted to give you some topics to jot down as a checklist. If you find that x approach works but then stalls, you can take a look at y or z and see if that helps. Most likely, your DD has multiple things contributing to her struggles. It will take time to sort out. I think Dr L is a good place to start. She was able to take my son from a bad place to a place where he could function pretty well. We then turned to an integrative osteopath who was able to get both of my kids to a place I once thought impossible. So it's a process of peeling away. Hopefully, you're on your way with both kids. I highly recommend reading through the forum archives and I know that many parents here can help be a sounding board for ideas. Bets of luck with the upcoming T&A for your son and the steroid burst for your DD! Edit - given your DD's past positive on babesia, I would really pursue lyme testing. Either Igenex or Advanced Labs - which does a blood culture that can take a picture of live spirochetes. I think it's worth re-posting your DDs story on the lyme board as well. Standard WBs and Elisa aren't very reliable. If you go to the lyme forum, you'll see "helpful threads" at the top of the forum. In there, you'll see some articles that discuss lyme tests and the controversy/reliability.

I don't have any experience with 5HTP or SJW. Here's an overview of the differences between tryptophan and 5HTP http://www.lidtke.com/difference-between-l-tryptophan-5-htp-article/ I know several families here use 5-HTP with success. I opted for tryptophan based on the fact that it has more uses in the body, is an essential amino acid that I'm sure my DD is lacking due to her selective diet and that 5-HTP carries a higher risk of anxiety or edginess than tryptophan. But that's not to say it's better. I was just more comfortable starting with tryptophan and it's worked for DD, so I've not had any reason to experiment with anything else. (inositol, which we tried first, made very little difference but she doesn't have true OCD). I never considered SJW due to mixed reviews on its effectiveness and lack of info on using it on kids. I was just more comfortable with an essential amino acid (tryptophan). But again, this is just my preference. I don't have enough research to really weigh in on what anyone else should or shouldn't try. I want to highlight that DDs issue is more heavily anxiety/depression than classic OCD. She is also not a clear cut Pandas kid. She does react to infection and tooth loss, but her driving issue seems to be methylation (she is MTHFR heterozygous on C677). However, she also seems to have an issue with the BH4 cycle and tryptophan is a key player in this cycle. So my experiences may not translate into the same success for a kid who has OCD issues. DD is 47bs and takes 500 mg tryptophan in the morning. Many take it at night to help with sleep, but we need it more for daytime sadness. For a brief time, she took 500mg in the am and 500mg at dinner. But she developed a hand tremor and a shaky feeling that might have been a mild form of seratonin sickness. So I backed down to 500mg and the tremor went away. Every other day, she also seems to benefit from tyrosine, which is a dopamine precusor and also helps with depression.

Thanks for this tip - we were just contemplating planting a few of these! You prompted my to google and I found this article: http://today.uconn.edu/blog/2012/02/controlling-japanese-barberry-helps-stop-spread-of-tick-borne-diseases/ ”When we measure the presence of ticks carrying the Lyme spirochete (Borrelia burgdorferi) we find 120 infected ticks where Barberry is not contained, 40 ticks per acre where Barberry is contained, and only 10 infected ticks where there is no Barberry.” Deer are often considered to be the prime source in spreading Lyme disease because they act as hosts to adult ticks; however they are not the only culprit in the forest. Since mice love the Barberry’s habitat as much as the hungry little arachnids do, they are an efficient vector for distributing immature ticks, those in their nymph stage, over a wide area. And, although the prevalence of B. burgdorferi infection in adult ticks is twice that found in nymphs, it is estimated that nymphs are responsible for 90 percent of human disease transmission. This is due to their abundance, and because they feed in the summer when people are most apt to be involved in outdoor activities."

Here's a review of various types of magnesium and its bioavailabilty - http://www.ancient-minerals.com/magnesium-supplements/ Vitamin C helps absorption, vitamin D supplements can cause a magnesium depletion. Make sure you give the magnesium away from abx, as it can interfere with abx. If used for any length of time, you need to be mindful of calcium levels, as increased magnesium can lower calcium. Re: inositol - it is like an SSRI. You should taper up when you introduce it and taper down when you stop it. Don't just abruptly stop. Here are some helpful articles: a. http://en.wikipedia.org/wiki/Inositol b. http://www.nutritionj.com/content/7/1/2 c. http://www.naturaladd.com/resources/articles/natural.html d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html e. http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/ f. http://www.ihealthtree.com/inositol-powder-8-oz-source-naturals.html You can buy inositol as a powder, which allows you to better control dose and taper up or down. It's slightly sweet, like confectioner's sugar. My son used to just take a 1/4 tsp and put it on his tongue, then wash it down with a drink. But it will mix with a juice or drink. You just need to let it sit for a bit to dissolve. For my son, inositol helped take the edge off but it never got rid of his anxiety or OCD entirely. For my daughter, it did very little. She found much better success with tryptophan, which is a precursor to seratonin.

I'm very confused by this. White blood cells fight all sorts of infections - bacterial as well as viral. I'm not understanding how a WBC test can tell you whether to prescribe abx.

I will be in the minority, but since you're looking for both positive and negative stories...HD IVIG was a very negative experience for my DS. But I know we seem to be in the minority in this. Like your DS, my son could not sustain remission for longer than 2 months. We did prednisone with success, PEX helped, but nothing "stuck". He had a clear link to several strep infections and I thought he was textbook Pandas. We thought IVIG was our last option. But when IVIG caused such a horrible backslide with no positives, we went on to find lyme. Once we started treatment for the right infection, he was finally able to find long periods of 100%. But the only role IVIG played in his recovery was that his negative reaction drove us to find the lyme. Aside from that, there were only negatives for him. I know others feel very strongly that it is absolutely the way to go and for some kids, it is. But I think it depends on what's driving the flair and what other issues are (or aren't) under the surface. I think you'll hear a lot of encouragement to go ahead with it, and your insurance coverage will probably be a factor. But everyone's health profile is different. My son's negatives or someone else's positives don't necessarily mean much when it comes to your son. I think your best guide is your true gut feeling on the procedure and its financial impact on you (if it's going to be a hardship, don't feel it's your only option or that you're a bad parent for not doing it). If you have some sort of hesitation, I'd listen to that. If you're posting mostly to support a decision you're already leaning toward, then I'd follow that. Best of luck with your decision.

How do I do a search on the forum? In the upper right corner of the screen you'll see your login name. Just below that is a search bar. You can type "detox" in the search bar or you can click on the gear shape on the far right and do an advanced search. I would also post your questions on the lyme forum. There are at least two moms from Canada on that forum - momcap and someone else. One is in the Toronto area and one is on the west coast. I dismissed lyme as a possible factor for my son for the longest time. But it was only after we treated the lyme that we saw improvements that lasted. A year and a half of treatment has brought him back to baseline and he's been symptom-free for several months. We stop all abx in a few days to see if the lyme is totally gone. He hasn't ticced in over a year (tho he does take many supplements to support his body and brain). Last fall, Advanced Labs came out with a lyme culture that works like a strep culture. It can take a picture of actual lyme spirochettes in your blood - no debate over antibodies or results. It's just shy of $600 and not covered by insurance but it avoids the controversy of all the other tests. You do need to be off abx for 4 weeks before taking the test. http://www.advanced-lab.com/spirochete.php A doctor must order the test. You may want to contact CanLyme for a list of doctors in your area http://www.canlyme.com/

Philamom- TMG stands for trimethylglycine. Here's a link http://en.wikipedia.org/wiki/Trimethylglycine Although generically referred to as Betaine, if you decide to supplement, you need to order TMG and not HCL Betaine (which aids in digestion but is not the same as TMG - learned that lesson the hard way). Dean - if you have a MTHFR mutation, the consequences would be 1. possibly higher than normal levels of B-12 or folate in your blood (because they wouldn't be used sufficiencly in proper methylation) and 2. elevated homocysteine levels. I suppose you could ask to test these things, but given the low cost and ease of testing for MTHFR, I think you'd get better info from the MTHFR test. Testing for high homocystiene wouldn't tell you which mutation you had or how severe (i.e. whether you had C677 or A1298 or heterozygous (one mutation) or homozygous (2 mutations - one from each parent).

I would seriously consider the possibility that this is a herx response. My son's tics came back for a time when he was doing some aggressive lyme treatments. In his case, detox helped reduce the severity -alpha lipoic acid, bentonite clay/charcoal, milk thistle for the liver, and motrin to help inflammation. It may be that the antibiotics are doing a good thing but you need to help the body get rid of the toxins created when the abx kill bacteria. You can search this forum and the lyme forum for detox topics. I wouldn't let a return of tics keep you away from abx if it's possible that the abx are doing something good (assuming you determine it isn't a yeast response)

The insurance negotiated rate for this test was $50 when we did it last year. It's a very simple lab test run by most if not all commercial labs (Quest, Labcorp et al). You can scan this thread for an overview of what to do with results. http://www.latitudes.org/forums/index.php?showtopic=17674 If you had a C677 mutation, your best bet would be to supplement with methylfolate, not regular folate. If you had an A1298 mutation, you would supplement with TMG. For some people, this may make a significant difference in moods and behavior. It did for my DD. Regardless of the improvements you may or may not see in behaviors, addressing a C677 mutation has huge implications for someone's risk of heart disease, stroke and macular degenerqation (which cost my dad most of his vision).

Colleen, I think you're right to take this as an early sign of something but try not to let it drive you nuts. You may want to talk to Dr M about testing her HLA-DR gene and/or for pyroluria. It could be that when she's fighting an illness, she could be having problems with either ridding her body of toxins and/or keeping her body supplied with enough zinc/B6 to support a taxed immune system. It could be that she's running at maybe 90% efficiency when she's healthy and you don't see any abnormalities. But then when she gets sick and needs 120% of resources and she only has 90%, that's when the deficiency really shows up as tics. It's only my theory, but in hindsight, I think this was true for my son. When he was 2, he developed an eye tic for a few days when he was sick and the pedi just shrugged. He went on to exhibit odd outbursts of pre-pandas behaviors as a toddler but they were so sporadic that no one put two and two together. Had we known about pyroluria and his struggle to detox normally, it may have lessened the impact of Pandas. The pyroluria test is $70 (tho not sure how you do a urine catch on a 1 yo) and the HLA-DR test is covered by insurance. If Lucy's body is killing bacteria but can't get rid of the die-off toxins or the dead cells (b/c her glutathione levels are low), this could be one cause of tics. Having to deal with mold toxins would only add to the overload. In a sense, it could be a herx-like response to fighting the infection and/or mold. Maybe she can handle the toxins from one or the other but not both at the same time. Zinc, B6 and alpha lipoic acid might be worth discussing. We never went thru the ordeal of ERMI testing but we did find mold (replaced 2 rugs, tossed everything in the basement, found a leak in the roof that had made some attic insulation wet and found mold inside my washer drum that was making three of us sick). A 100 yr old house near the ocean would certainly be suspect. Sometimes, this becomes a multi-pronged approach where abx is only one tool. Dr M would be a good one to use as a sounding board on this.

I came across ratios of between 12:1 and 15:1 of zinc:copper. But it's a hard thing to measure. Vitamin C is a copper chelator, so if you supplement with C, you could be losing copper faster than zinc regardless of the amounts you put into the body. You also have to consider dietary sources. In my case, a genetic tendency to excrete zinc (pyroluria) means I assume some portion of the zinc that goes in comes right back out without being used. So you could argue that you'd need to supplement at an even higher ratio. You can periodically measure both with a blood test, but blood tests don't accurately reflect the mineral levels within a cell, only what's in the plasma outside the cell. So we use the blood tests as a rough guide but end up supplementing based on symptoms (e.g. when DS throws up after taking copper, I skip for a few days, if he takes it without issue, we stay on schedule). It's far from perfect no matter how you approach it. But I'd say that if you've been supplementing copper for some time, you should also make sure you're getting adequate zinc. You may want to google "copper personality" to look for signs of high copper effects on mood and behavior.