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Detoxing Newb looking for primers, tips, advice


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Hello,

My PANS DS9 recently started treatment for Lyme, Erlichia, and MycoP following positive IGeneX tests and climbing MycoP IgG numbers (MycoP testing from Labcorp). DS's first episode was in Feb08 (tics). He is taking Augmentin in AM & PM and Azithromycin in the AM. He also takes VSL3 probiotic in the afternoon. Other daily supps are 10g Inositol, 1g Taurine, 1 tsp cod liver oil, and 600IU vit C. We are presently managing herx symptoms short-term with Motrin 3x daily, but will not use it more than 1-2 weeks at a time because we want to protect his liver. Dr B is the prescribing doc for the ABX & probiotics. We also checked in with Dr T to get his buy-in on the treatment plan.

 

From my reading here on this board, I know that detox is critical to healing. None of the docs we are working with seem to be able to advise about detox. So far, I have started a detox bath of 2:1 epsom salt and baking soda. I would like to do more for him. DS is allergic to ragweed, so milk thistle is not an option. [Edited to add: DS will not swallow pills yet.]

 

Questions from this detox newb:

1. I would like to start lemon water as well. What is the effective proportion of lemon juice to water? So far I have sliced a lemon and squeezed a couple of slices into a glass of ice water for him, but I suspect this is too dilute. I have read 1/2 lemon in some places, 1 whole lemon in others. It needs to be palatable and not too hard on his teeth enamel however. Does it matter if the water is warm or cold? How many servings per day?

2. I read the post from SF mom about her detox drink here: http://www.latitudes...showtopic=18090 but I am concerned about starting this without consulting with a doctor. Before we had the IGeneX results, we had one appt with a wholistic doc who is supposedly an LLMD, but I am still forming my opinion about him (trust issues from so many doctors over the years!), so I feel a little stuck. Am I being a wimp about this? Is this the type of detox stuff people do with or without a doctor?

 

So, what to do & how to get started? Is there a good thorough "detox playbook" out there that anyone can refer me to?

 

Your help is so appreciated!

Edited by bsimon3
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I don't know a lot about detox, and I'm sure others will chime in with some great advice, but Burber from Nutramedix is a good basic detox supplement. Work your way up to 10-15 drops twice daily mixed in water or juice. Parsley from Nutramedix can be combined with it as well. Good luck. Let me know if you find that playbook :)

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We also use Nutramedix burbur and parsley, Epsom salt baths, juice from 1/2 organic lemon in a glass of water 1 or 2 times a day. I add 3-4 drops of stevia and DD10 says it tastes like lemonaide. 1 tsp metamucil (psyllium husk) once a day away from supplements/abx.

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i referred my sister to SFmom's detox drink. . . when reading it, i thought, i many years ago did a morning drink with aloe vera, so i thought i'd get some. in the past few days of drinking it, i really think i feel more energy and actually popped out of bed this morning -- which is a BIG issue for me that i never am able to do. could be a coincidence but i'm going to keep drinking it and see how it goes. was wondering about giving it to dss.

 

 

i think it is fairly benign -- can be a digestive aid - so could have some negative digestive symptoms at first.

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Thank you for all the responses so far. Keep them coming, please :)

 

I just ordered the burbur and parsley, and now, more questions from the newb.

1. Do I need to also add a binder such as charcoal? If the answer is yes, what binders work with a kiddo who doesn't swallow pills?

2. Does it matter what time of day I give the lemon water, burbur and parsley? If I work up to SF mom's detox drink, does it matter when that is given?

 

Thanks all, you're the best!

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I would definitely work up to full detox drink in the following order: lemon water, aloe vera, ChlorOxygen or Chlorella Growth Factor... maybe add a little juice if not tolerable to taste like Green Goodness (more alkaline than most juices) and available at almost any store. http://bolthouse.com/our-products/beverages/smoothies/green-goodness/detail

 

We do not add juice but 2 small scoops of the Vitamineral Green which may not work for you because it has 'Milk Thistle' in it. You could replace 'Green' product with 'Earth' product by Health Force. Earth is all root related food supplements and I often rotate between Green and Earth.

 

I drink detox drink twice daily and typically mid morning and mid afternoon. I take antibiotics first thing in morning and before bed. I discovered the detox drink from of a friend of friend who was attempting to survive cancer. My two main symptoms this past year have been kidney pain and fatigue. I've had other symptoms like severe itching/skin sores/migrating pain/headaches/noise intolerance that have come and gone. The drink helped immediately with both kidney pain and fatigue. I have since added MSM powder to drink which will help provide oxygen to cells similar to the ChlorOxygen. I am working through herx which has brought back my fatigue for the last two months. I am building up dosage amount of MSM to 6,000 m.g. daily but currently at 3,000 m.g. which is an adult dose and do not expect fatigue to resolve for a while. MSM should not be confused with MMS as they are very different. I would not consider adding something like MSM until you are well into treatment for your son and understand how extensive a herx can be and what he can and can not tolerate. My son who is 6O plus pounds takes 1,000 m.g. of MSM and working towards 2,000 m.g. per day.

 

We've also done a rotation of herbs for detox as well inclusive of burbur which is very good. My twins who are 5 and will not drink detox drink but will take Chlorella Growth Factor in juice. http://www.worldwellnessstore.com/chlorella-growth-factor-100percent-pure-50-ml-liquid-by-biopure.htmlis

 

I no longer use bentonite clay 'binder' as I can not fit it in my schedule. However my older son and younger twins do still take bentonite it at least 1 1/2 hours away from antibiotics (our schedule is tight) but most take it two hours away from antibiotics. Charcoal pills are similar to Bentonite.

 

I have stuck with a regular daily detox program because in the darker days of PANS I knew intuitively it helped my kids and was also recommended to us by a nutritionist. Looking back I've learned so much since then and it been over two years and has helped tremendously.

 

Wishing you all the best in recovery.

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Hello,

My PANS DS9 recently started treatment for Lyme, Erlichia, and MycoP following positive IGeneX tests and climbing MycoP IgG numbers (MycoP testing from Labcorp). DS's first episode was in Feb08 (tics). He is taking Augmentin in AM & PM and Azithromycin in the AM. He also takes VSL3 probiotic in the afternoon. Other daily supps are 10g Inositol, 1g Taurine, 1 tsp cod liver oil, and 600IU vit C. We are presently managing herx symptoms short-term with Motrin 3x daily, but will not use it more than 1-2 weeks at a time because we want to protect his liver. Dr B is the prescribing doc for the ABX & probiotics. We also checked in with Dr T to get his buy-in on the treatment plan.

 

From my reading here on this board, I know that detox is critical to healing. None of the docs we are working with seem to be able to advise about detox. So far, I have started a detox bath of 2:1 epsom salt and baking soda. I would like to do more for him. DS is allergic to ragweed, so milk thistle is not an option. [Edited to add: DS will not swallow pills yet.]

 

Questions from this detox newb:

1. I would like to start lemon water as well. What is the effective proportion of lemon juice to water? So far I have sliced a lemon and squeezed a couple of slices into a glass of ice water for him, but I suspect this is too dilute. I have read 1/2 lemon in some places, 1 whole lemon in others. It needs to be palatable and not too hard on his teeth enamel however. Does it matter if the water is warm or cold? How many servings per day?

2. I read the post from SF mom about her detox drink here: http://www.latitudes...showtopic=18090 but I am concerned about starting this without consulting with a doctor. Before we had the IGeneX results, we had one appt with a wholistic doc who is supposedly an LLMD, but I am still forming my opinion about him (trust issues from so many doctors over the years!), so I feel a little stuck. Am I being a wimp about this? Is this the type of detox stuff people do with or without a doctor?

 

So, what to do & how to get started? Is there a good thorough "detox playbook" out there that anyone can refer me to?

 

Your help is so appreciated!

Here is a very well written article on clays in biotoxin removal. Bentonite, Bandaids, and Borborygmi

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895274/?tool=pubmed

Red

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My son has been seeing a Naturopthic doctor and has taken any of the following (that have not previously been mentioned):

 

-Detox Deodorant by Herbalix Restoratives (on his feet right before bed - if well tolerated then neck and underarms).

 

-Sockeye Salmon Oil from Vital Choice (3 gel caps before each meal - can be opened and put in food/drink).

 

-Chlorella Manna by HealthForce Super Foods (son started at 20 tabs with/salmon oil 3xday - but you could start at a lower dosage -also powdered form of this).

 

Salmon oil and chlorella have been great for both son and dh. Son is still taking but dh had to stop because cholestrol too low.

 

-Immunocidin "Detox & Immune -specific lymphatic support" by Premier Research Lab (liquid - not sure if available with/out dr. orders) (my sons lymph #'s have been high the entire illness)

 

Too bad your doctor is not on board with this part of treatment as detox can make the journey a bit easier on the child and provide nutrients that could also be useful for long term health. Your a great mom to be checking into this!

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I thought I'd add this short little video regarding detox drink. Concept and products are similar to Health Force Vitamineral Green and Oxygen Supreme Drops or ChlorOxygen verses Supergreen and Prime PH. I've tried Supergreen and prefer the taste of Vitamineral Green.

 

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Thanks so much, one and all for your responses, resources, and encouragement. We saw the doctor again yesterday (the one that I mentioned in my previous post; still not convinced he's a true LLMD, but he seemed very comfortable discussing detox, etc.). For whatever it's worth, and in case it may help others who read this thread in the future, these are my notes about supporting DS's healing (this is what the doctor said, I haven't had a chance to research any of this on my own yet or buy any of the products mentioned here):

 

DS has a single C677 MTHFR mutation. Add Methyl-B6 (25 mg per day), Methyl-B12 (1 mg per day), and Methyl-Folic Acid (1 mg per day). Kirkmann makes products specifically for kids.

 

DS's Reverse T3 is a little high, though still in the acceptable range according to Labcorp.Doctor like to see T3 below 3. It could be the gut. The higher the T3, the lower the metabolism. Watch this for now. Could consider adding iodine, 1 drop (12.5 mg) per day such as lugol soluiton or kelp drops. He doesn't necessarily need this, however.

 

DS's magnesium measures a little 'lowish', though still within Labsorps acceptable range. Options: epsom salt baths, magnesium glycinate (available in pill, powder, and liquids forms), "Calm" powder @100mg.

 

Aluminum: high end of acceptable. Get rid of grandma's old cooking pot that we use, check toothpaste and toss it if aluminum is an ingredient.

 

Consider a powdered complete mineral product to toss in with the fruit smoothie I make for DS daily. Kirkmann makes one specifically for kids. This will also help push the metals. This could be done in lieu of the magnesium supplementation mentioned above.

 

Chlorella (green algae) in any amount (a couple of drops is fine), doctor claims the high concentration of chlorophyl takes the toxins out of the body.

 

Cemento drops a.k.a. 'Cat's Claw' - most common herb used to treat Lyme. Nutramedix makes a good one. Use 10 drops.

 

Parsley & Burbur - same as mentioned in previous posts.

 

Arabinoglalactin - powdered soluble & insoluble fiber. Also said that it's fine to just stay with the ground flax seed that I already toss into the daily smoothie. The important thing is to include plenty of fiber. Emphasize fresh fruits & veggies.

 

So those are my notes. Any reactions from anyone, either positive or negative?

Newb

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1344516370[/url]' post='144273']

You may want to ask about omega's next visit. Sounds like you have a good start!

 

Thanks! We talked about them at our first vist and doctor was pleased that we give cod liver oil. We use children's DHA soft gels, made from 100% arctic cod livers. DS gets 252 mg total Omega 3s (82 EFA, 125 DHA, 45 mg 'other Omega-3s") per day. Does this suffice or is the more to it?Newb

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1344516370[/url]' post='144273']

You may want to ask about omega's next visit. Sounds like you have a good start!

 

Thanks! We talked about them at our first vist and doctor was pleased that we give cod liver oil. We use children's DHA soft gels, made from 100% arctic cod livers. DS gets 252 mg total Omega 3s (82 EFA, 125 DHA, 45 mg 'other Omega-3s") per day. Does this suffice or is the more to it?Newb

All I can tell you is what my son is taking:

 

3 sockeye salmon oils (3,000 mg) along with 20 Chlorella tabs (Healthforce Super Foods) 3x day before each meal. Taking them together creates some more benefits of which I have read but do not know the details. :)

 

My son is 14 yrs. old and over 150 lbs. but started these 15 months ago when he weighed much less.

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1344516370[/url]' post='144273']

You may want to ask about omega's next visit. Sounds like you have a good start!

 

Thanks! We talked about them at our first vist and doctor was pleased that we give cod liver oil. We use children's DHA soft gels, made from 100% arctic cod livers. DS gets 252 mg total Omega 3s (82 EFA, 125 DHA, 45 mg 'other Omega-3s") per day. Does this suffice or is the more to it?Newb

Another thought occurred to me that you want to make sure the cod liver oil has no toxins/metals in it. All the ones tested from our Vitamin Store (best quality) did not test well for these reasons. We buy our salmon oil from www.VitalChoice.com. I order 3 (180 capsules) at a time so there is no shipping cost. These tested our well with our dr. (muscle tested).

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DS has a single C677 MTHFR mutation. Add Methyl-B6 (25 mg per day), Methyl-B12 (1 mg per day), and Methyl-Folic Acid (1 mg per day). Kirkmann makes products specifically for kids.

 

 

Sorry I didn't reply sooner - but was dealing with my own methylation issues at home. On the methyl-B6 - I've not heard of anything called that (not that I've heard of everything). The active form of B6 that I know of is P-5-P and this is what I look for in a supplement. For a child, 25mg would be on the high side and if you chose to supplement, I would start at a lower dose and build up only if you saw no negative effects (which would take weeks to show up). The one condition that would change my advice -kinda - is if your son has KPU (aka pyroluria). This is a genetic condition that causes you to pee away your zinc and B6 before the body can use it. My son has it and my daughter is borderline for it. In our case, both kids started at 19mg of P-5-P. My DD stayed there. My DS worked up to 75 mg over a period of months. I'd suggest you read up on KPU and ask your doctor about testing for it. I can send you articles if you're interested or you can search the forum for info.

 

On methyl-B12 - this is very poorly absorbed - like 1% of what's injested if swallowed as a pill. It has to be taken in a sublingual form - held under the tongue while it dissolves. Many who need it end up getting injections. Again - work up in dose.

 

On methyl-folate...make sure you supplement with something called l-methylfolate. It has to have an L in front of it or it's not in the active form. It can't be regular folic acid or folinic acid. I quickly searched Kirkman's site and didn't find any l-methylfolate products. I could've missed it, but be cautious. They do sell a methyl-B12. But the only products I know of for l-methylfolate are Thorne, Metagenics, Life Extension, Seeking Health and Holistic Health. Since you know your DS has the C677 mutation of MTHFR, it's important to only supplement with the methyl form of folate.

 

I use this for myself (I too have one mutation of C677) - http://www.holisticheal.com/folapro.html

My daughter takes one drop of this http://www.holisticheal.com/methylmate-b-nutritional-supplement.html in a medicine cup with water.

 

I started my DD7 on this a few months ago at one drop and then worked up to 3 drops. This proved to be a big mistake. She flipped out, got suddenly angry and irrational, had muscle pain - it was horrible. We're back down to one drop/day and she's back to being a stable, (mostly) sweet and agreeable child. More is not always better. For a child, I wouldn't go any higher than 400mcg without a lot of caution and at a time when so many other things are in flux. If you chose to go beyond that dose (and I realize some people do) then I wouldn't be adding or changing anything else for several weeks after any dose increase. Since you're dealing with other detox issues, that will be hard. Also realize that as you start to supplement things for methylation, you may see a worsening of symptoms as detox conveyor belts get working again. Which is another reason to go very slowly on dose increases.

 

Good luck!

 

Oh - forgot to comment on Omega 3s - if you have pyroluria, you're advised to use evening primrose oil, which is an anti-inflammatory type of Omega 6. In those with pyroluria, they tend to be deficient in Omega 6s and both 3s and 6s compete for binding sites. So my DS needs to avoid Omega 3s and supplment Primrose instead. Another reason to test for this (it's a $70 urine test but not covered by insurance)

Edited by LLM
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