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detox does not help...what do you do?


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my dd10 is on her 6th day of mepron and biaxin. As expected, her tics have increased along with minor headaches on occasion. Nothing helps to calm it down. I am new to babesia treatment, still not sure of diagnosis even. All I know is I have to try this. Anyone have this problem? Everything I was told to try, I have and nothing has ever helped her. Is this the way it is? Do you just suffer through? Hardest part is how long and how bad? Any help would be appreciated. Only symptoms are v/m tics and anxiety. She has been waking at night on occasion too. That used to happen when she was younger but not much anymore.

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I don't have any experience with either of these, so was hoping someone else would chime in. What are you doing for detox? What, if any, additional supplements are you using? Have you ever used magnesium for tics?

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I don't have any experience with either of these, so was hoping someone else would chime in. What are you doing for detox? What, if any, additional supplements are you using? Have you ever used magnesium for tics?

 

I am not giving any additional supplements. I was told we could do daily detox teas, take ibuprofen and/or benedryl, as well as drink lots of water. We are doing all of that and nothing helps. Also, have tried epsom baths on and off for years and it is never lowered her tics. A few years back, I supplemented with magnesium for almost a year and it never helped. I am at a loss. I am not sure why these detox methods work for most people but nothing has really ever helped my dd. I have even tried charcoal tabs and it only caused stomach aches.

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My dd6 reacts a lot too- sensitive- we did find out with HLA testing that she has one 'dreaded' gene-

meaning she doesn't detox neurotoxins from Lyme or mold well-

and some MTHR genes that need help, too.

 

I have been where you are, honestly thinking 'yeesh, I should just take her off everything'

and I have, and I get maybe a day or two break, and then it all comes back anyway.

 

Just added Rifampin for her today, first time, she's been on Cipro about 4 days-

well, an hour after Rifampin, we had a scary exorcist moments, and later today I see purple marks I've never seen on her back.

 

I want to keep her on this, but detox here has to look like this:

2 hours after antibiotics, I dose her with CMS powder (binder)

If I didn't have CMS powder, I'd be using the Bentonite caps I have here, or charcoal.

But 2x a day.

Then, in the middle of the night, I wake her for a few moments to get bowel movement supps in-

Oxy mag or Oxy powder.

I have burbur drops, gentle drainage drops- Epsom salt cream I rub on her, she won't take the bath-

whatever I can find.

 

I am not as far along as you, and I'm just throwing stuff out-

it's hard, I know.

Hang in there--

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What are the genes we should test for -- dreaded and otherwise?

 

Thanks.

My dd6 reacts a lot too- sensitive- we did find out with HLA testing that she has one 'dreaded' gene-

meaning she doesn't detox neurotoxins from Lyme or mold well-

and some MTHR genes that need help, too.

 

I have been where you are, honestly thinking 'yeesh, I should just take her off everything'

and I have, and I get maybe a day or two break, and then it all comes back anyway.

 

Just added Rifampin for her today, first time, she's been on Cipro about 4 days-

well, an hour after Rifampin, we had a scary exorcist moments, and later today I see purple marks I've never seen on her back.

 

I want to keep her on this, but detox here has to look like this:

2 hours after antibiotics, I dose her with CMS powder (binder)

If I didn't have CMS powder, I'd be using the Bentonite caps I have here, or charcoal.

But 2x a day.

Then, in the middle of the night, I wake her for a few moments to get bowel movement supps in-

Oxy mag or Oxy powder.

I have burbur drops, gentle drainage drops- Epsom salt cream I rub on her, she won't take the bath-

whatever I can find.

 

I am not as far along as you, and I'm just throwing stuff out-

it's hard, I know.

Hang in there--

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Oh, and I'm sure you know this, but I have to fit massive probiotics around all this so she doesn't get gut infections which mask everything with bad behavior here anyway,

Trying to squeeze in glutathione for detox, B vitamins, zinc, l-taurine, fish oil-

yada yada- lots of work.

But I would love this girl well (love her anyway, of course, but YKWIM)

 

As far as tics, we have vocal ones, either die off or exacerbation.

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LFran - the gene testing for your ability to detox mold/lyme toxins is an HLA-DR gene test. It should be done at Labcorp.

 

The MTHFR gene S&S refers to is a methylation marker - a mutation in this gene means you have trouble converting folate and instead need to supplement with methyl-folate or else you'll have issues with methylation, energy, inflammation and possibly detox issues downstream. We had this test done by Quest. The lab's "retail" fee was $450, the insurance "negotiated rate" (what a scam) was $50 and because we'd met our deductible, our out of pocket was $10. If we hadn't met our deductible, it would've been $50 - so not a hugely expensive test and the result can help you a lot - IMO - the MTHFR test and the KPU test were game changers in my house. The HLA-DR test was helpful but because our result wasn't the "dreaded" one, it hasn't played as big a role in our treatment plan, but still helpful to know).

 

Keeptrying - for detox, we use milk thistle (for the liver) and charcoal (3-6 capsules). Have used clay pills in the past. Because binders can cause constipation, we also give 1-2 psyllium husk capsules (or you can do a fiber/metamucil type drink). Have found that 200 mg of magnesium (we use mag glycinate) keeps BMs regular. Detox only works if you have elimination - need to both bind and eliminate the toxins.

 

Water is good for any body and my kids drink a fair amount of it. But that will primarily flush the kidneys. The detox for most of the toxins is thru the liver/bowels. You need water to keep the bowels moving too, but water alone probably isn't sufficient for the kind of detox you're looking to do.

 

Epsom salts don't seem to help us either but the kids will do them once in awhile as part of a relaxing bath. It's not part of our "regimen". Benadryl has an "activating" effect on my kids. Ibuprofen helps my son but not my daughter. I tend to only use it during bad episodes to help with inflammation/Pandas behaviors - esp. the silliness/impulse control stuff. It isn't part of our detox protocol. We have used glutathione and DS felt it helped, but it got crowded out of the budget as we added other things.

 

When DS had a rough time detoxing from tindamax, his tics, which had been gone for 18 mos, came back in a big way. That's what ultimately led us to look at detox issues, the gene testing, and how we found the KPU/zinc deficiency. Once we treated for that, the detox pathway greatly improved and these other detox things worked much better.

 

So if it were me, I'd add in milk thistle for the liver (if not allergic to ragweed), charcoal or clay as a binder and magnesium for regularity (the last two away from abx). You are probably seeing a herx and this can last for several weeks regardless of genetics. But I'd still add the detox stuff now to help capture/eliminate the toxins. If you still don't see improvement in a few weeks, consider testing HLA-DR, MTHFR and KPU.

 

Sometimes, in a bad herx, people take an abx holiday and either cut back or stop abx for 3-5 days to give the body a chance to detox without killing more stuff and clogging more toxins into the pipeline. But that's something to run by your LLMD.

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My dd6 reacts a lot too- sensitive- we did find out with HLA testing that she has one 'dreaded' gene-

meaning she doesn't detox neurotoxins from Lyme or mold well-

and some MTHR genes that need help, too.

 

I have been where you are, honestly thinking 'yeesh, I should just take her off everything'

and I have, and I get maybe a day or two break, and then it all comes back anyway.

 

Just added Rifampin for her today, first time, she's been on Cipro about 4 days-

well, an hour after Rifampin, we had a scary exorcist moments, and later today I see purple marks I've never seen on her back.

 

I want to keep her on this, but detox here has to look like this:

2 hours after antibiotics, I dose her with CMS powder (binder)

If I didn't have CMS powder, I'd be using the Bentonite caps I have here, or charcoal.

But 2x a day.

Then, in the middle of the night, I wake her for a few moments to get bowel movement supps in-

Oxy mag or Oxy powder.

I have burbur drops, gentle drainage drops- Epsom salt cream I rub on her, she won't take the bath-

whatever I can find.

 

 

Are the purple marks bartonella? You may be deailing with more than one thing, and cipro and rifampin are used to treat bart.

 

I am not as far along as you, and I'm just throwing stuff out-

it's hard, I know.

Hang in there--

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Thanks for answering the testing part to Ifran, LLM- so much better at it than I am.

 

The HLA is tied to the Shoemaker mold thing- dd having 1 'dreaded', one of the worst-

looking back makes sense, I've stopped protocols (not lyme ones) in the past, die off too much.

Then again I think: would we even be this sick if our bodies didn't have trouble detoxing, anyway?

 

The HLA test cost me $600 - before deductable met- I am on the fence about getting it for me-

but I might, since there is a good chance she may have got the gene from DH-

he has the constant respiratory issues, despite being cardo fit-

whereas I have none- no allergies- and since we've cleaned our house up of possible mold,'

if it is him with 'dreaded' he needs to detox it out.

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