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Any advice for inflammation?


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Hi everyone,

 

My DS asks for Ibuprofen everyday - I give him 300mg each morning before he goes to school...he says it helps his tic and he feels better. I'm concerned about daily ibuprofen though and what it's doing to his gut.

 

He used to take Curcumin but doesn't respond well to it so we had to discontinue. His LLMD has given him two anti-inflammatories which he takes everyday: InflamAway and Cyflacalm. These two don't seem to be doing the trick for him though, so he's also asking for ibuprofen.

 

His LLMD prescribed Zorvolox last week but the pharmacy said it is not advised for a 12 year old so we had to pass on that option.

 

Does anyone have any advice for inflammation? He is heterozygous for MTHFR and CBS...so not sure if that matters but something to consider when adding stuff to the mix.

 

Thank you!!!

 

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Ideas to look into:

 

resveratrol (japanese knotweed/polygonum cuspidatum)

 

pterostilbene (comes from blueberries, supposedly more brain access than resveratrol)

 

I don't know whether either of the above have sulfur. If you're a Buhner reader, there may also be some lyme&co herbs that are anti-inflammatory; I'm thinking of isatis. Also certain antibiotics, as often discussed here (e.g. minocycline).

 

Adding: how could I forget pycnogenol!

Edited by jan251
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We've had to use combinations of all of above, switching it up every 6 months or so. I give 800mg Ibuprofen (DS17 weighs 150# though) during flares. Also we've been treating for 3+ years, so he's been on combos of these things for a long time.

 

I think detoxification has to be worked on along with just controlling inflammation.

 

Are you doing liquid Cyflacalm or capsules?

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Ideas to look into:

 

resveratrol (japanese knotweed/polygonum cuspidatum)

 

pterostilbene (comes from blueberries, supposedly more brain access than resveratrol)

 

I don't know whether either of the above have sulfur. If you're a Buhner reader, there may also be some lyme&co herbs that are anti-inflammatory; I'm thinking of isatis. Also certain antibiotics, as often discussed here (e.g. minocycline).

 

Adding: how could I forget pycnogenol!

Hi jan251! Thank you for the tips. I was up late researching all of them. My son was on Doxy for a time and did really well on it until he got a severe sunburn in July. At that point we changed him to Cedax...which never brought the same level of 'good.' I guess that class of abx (Doxy and Mino) really do help with inflammation. I have an appt with our LLMD at the end of this month and will ask him if we need to move back to Doxy or Mino now that winter is approaching and less of a problem with sun).

 

Thanks also for the great tips on herbals...do any of these Resveratrol, pycnoginol, etc. produce a herx? Just wondering...

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We've had to use combinations of all of above, switching it up every 6 months or so. I give 800mg Ibuprofen (DS17 weighs 150# though) during flares. Also we've been treating for 3+ years, so he's been on combos of these things for a long time.

 

I think detoxification has to be worked on along with just controlling inflammation.

 

Are you doing liquid Cyflacalm or capsules?

Hi tj21 - thank you!

When your DS flares and you give ibuprofen is it just for a few days? What's the longest you've given it to him without a break. We only give 300mg once a day but I'm still worried about his liver with all of the abx and supplements as well as ibuprofen...and his gut.

 

He takes Cyflacalm capsules and his LLMD called today and said to try Inflammatone capsules and also UltraInflamEX which is a powder. I have to look into those next...but the list of things he takes is long and exhausting and enough is enough. He takes a handful of supplements and abx in the morning, then a few more after school, then more abx at dinner, then a few more supps and probiotics before bed...it's a never ending process for the poor kid.

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We've gone as long as 2 weeks, I think. Fortunately his gut is okay so far. We do 2 probiotics as well.

 

Our NP thought the Cyflacalm drops were better than the capsules, so we used to use the drops.

 

I know, it sucks, I have an entire spreadsheet for med-fills b/c it got so complicated, and we have to break up the morning and bedtime meds into 3-batches, there are so many. Like 15+ supplements, and 8-10 prescriptions, 5x a day dosing. Plus drops, including Cellfood (that might be good for inflammation too).

 

Edit: Also, we take Glutathione for liver stabilization. Liposomal is best, but it's expensive, so sometimes we use regular Glutathione. DS17 liver enzymes normalized after starting these.

Edited by tj21
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On the resveratrol, if I give too much (two capsules and often) then yes, I *think* I see a herx. Usually I'll do just one capsule (ds is 75 lbs). I use the one by Seeking Health so as to avoid the resveratrol from grapes that is often contained in the regular brands (gives me a headache). On lyme forums, there do seem to be people who herx from resveratrol. But, rowingmom's child here on this forum did well with resveratrol, if I recall.

 

Pycnogenol is good and there are studies on attention and test anxiety. Intuitively, I don't use this one at night. Same for the blueberry one.

 

Mino produces a definite herx in my ds - or exacerbation of symptoms, more OCD and dilated pupils - so I don't know what to think about that. Unfortunately we just can't use it right now. I'd really really like to though *sigh*.

 

As tj21 mentioned, detox is another important angle to consider - I like milk thistle (I think it has sulfur), Broccomax (surely sulfurophane is sulfur? don't know) and NAC (obviously sulfur), all for liver.

Edited by jan251
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With our doctors okay, we do ibuprofen 3x a day daily for over a year now...DS does get frequent blood work and I worry about risks, but then again, if its helping protect his brain-which it sure seems like, then we will use and continue to monitor.

We have also added liposomal glutathione from llmd, opc chews, vit d and phopha tidy choline.

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Have you tried Low Dose Naltrexone? It is the only medication that worked for my son. My son had severe scalp pain. So bad, he would cry when washing hair in the shower, scalp stimulation would cause severe vocal tics, could not tolerate a haircut, had hypersensitive skin issues so bad he could not tolerate a bed sheet and daily persistent headache with pain level at 8. After taking 3mg of LDN for 8 weeks, all pain, and inflammation issues are gone. He is also homozygous for the same 2 gene SNPs that you mentioned in your post.

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Hi everyone,

 

Thank you all for the great input on this thread. I had an appointment with our LLMD yesterday and he basically did a complete overhaul on the protocol for my DS12. DS is having a major flare in motor and vocal tics for some unknown reason and our LLMD believes we need to beef up the anti-inflammatories to address the problem. He said that ibuprofen when taken with food for long periods of time is fine...as long as he takes it with food. So, for a month he will take 400mg of ibuprofen twice a day.

 

He has added some interesting (I have a whole new batch of research I get to do now) new herbals/binders to the mix:

 

- Takesumi Supreme - one scoop before bed...supposed to be an excellent charcoal binder

- Pinella and Burbur - 20 drops of pinella and 10 drops of burbur -- once or twice a day

- Catecholacalm - I think this is a multi with B vits and some other good stuff

- Chlorella - this is an algae to help with oxygen intake, etc.

 

Down the road he wants to add mushroom immune max, A-V drops, Cryptoplus...but we have to get DS going and stable first before adding these.

 

We also switched his abx from Cedax to minocycline...so he's now on Mino, Biaxin and slowly adding Alinia.

 

He also suggested LDN which Rachel mentioned in this thread...he decided to hold off on that for now...but he did bring it up so it's on his mind.

 

Let me know if any of you have experience (good, bad or other) with any of the above...I'll update after a bit to let everyone know what has helped/not helped with inflammation after we've had some time on this plan. But I sure am doing a lot of praying that this new protocol helps my son.

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