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landamom

For those who have started Enhansa/curcumin

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We are looking at adding curcumin to our routin for DD, but honestly I'm getting so tired of adding things that seemingly do nothing. Would love to hear if anyone has actually seen success with this. Thanks!!

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We have added it. Started at 75mg in AM and worked our way up. We are now at 150mg B L and D. It is better absorbed with food. We saw immediate die off with the 75mg and with each increase.

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For me, who is off all treatment, Enhansa or Longvida curcumin are a supplement I cannot give up, and I've tried, for financial reasons, but it's a keeper.

I had a nose surgery years back, and when on Enhansa or Longvida, I can SEE the swelling go down- go off, swelling back up-

plus, it helps intestinal inflammation - my gut works better on- and for me, I believe it helps yeast.

Plus, the studies re: curcumin and Alzheimer's are fascinating.

 

My dd- I did Enhansa protocol years ago- along with increased vitamin C- what happened as we reached max dose:

A huge viral die off. A chicken pox like rash/ spots (she had been fully vaxed with Varicella vaccine previously)

started on her upper body, and in 1 months time, while on Enhansa and higher dose vitamin C, worked it's way down her entire body-

torso to arms, then down legs- it was wild- they did not itch, nor have pus or heads-

took to regular Dr. and they were stumped when they saw it, and shook their head at me-said: huh! Looks like chicken pox.

after this viral die off rash left, I decreased dose of Enhansa and took her off-

during that time, her bowels were perfect, gut inflammation also decreased-

 

I'm a fan.

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My dd13 has been taking it for about 3-4 weeks. She has just worked up to 600 mg with breakfast and 600mg with dinner. The die off is still occuring (in her case, bad gas). She did have viral symptoms for 4 days in that time frame, but who knows if it was a newly contracted virus or not. She also complained on sores in her mouth, which was new. So, we are still working on it. I always remember what Dr. K told me years ago; good reaction and bad reaction are positive and diagnostic. No reaction/does nothing- move on.

 

I have seen improvements in cognition, but she also seems more anxious. Does improved cognition/awareness raise angst in a 13 year old? Perhaps. I think it's too early to tell and we need to continue to monitor. I have been very pleased that the Enhansa appears to be effective. We've started our younger dd9 on it as well, but will only go to 150mg for her mainly as anti-fungal with abx and probiotics.

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Both my daughter and I are taking it. It is helping me with joint pain and headaches a decent amount so far. As far as kiddo and die off etc, it is hard to say right now since we have both had bronchitis since starting it (unrelated) so I cannot tell what symptoms we have that are from being ill and which may be die off (fever, fatigue etc).

 

I feel your pain on the starting many different things seemingly to no avail. We have more than our share of failed attempts stored away in a cabinet :(. I did decide that for this we would try BCM-95 instead of Enhansa. Both are Bio-enhanced curcumin longvida, I paid $23.00 for sixty of the 400mg capsules as opposed to how much Enhana costs $58.00 for #150 of the 150mg capsules.

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Sorry to bring everything back to methylation - trying not to sound like a broken record. But if you have a CBS mutation and can't tolerate sulfurs well, enhansa/curcumin wouldn't be well tolerated since it's high sulfur. Not at all trying to dissuade anyone from trying it. I only mention it because sometimes I'd try a supplement (like NAC which is also high sulfur) and DD would flip out and I'd scratch my head. She was struggling when we tried enhansa and it didn't help and now I know why. So if you've done 23andMe and have CBS issues, avoid it. If you don't have CBS issues, it should be helpful.

 

For this reason alone - the ability to "pre-screen" a supplement based on it's methylation properties - the 23andMe test pays for itself if it saves you from buying just a few "wrong" supps.

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I honestly don't understand it, Laura. If a doc doesn't tell me to order it, I won't know what to do with the results. Dr. O wants us to do the neuroscience test just to make sure we aren's missing anything and I feel like we are in good hands with her direction.

 

I do know that people need to be careful about not confusing Sulfa drugs and sulfur. My dd and I cannot handle sulfa drugs like Bactrim. My dd's AST and ALT went crazzzzy high, then came down just as quickly and have remained completely normal despite bountiful meds and supplements. NAC didn't help or hurt; it was a "does nothing-move on."

 

" Sulfa drugs, (sulfanilamide, sulfathiazole, sulfadiazine and about a hundred others) are a class of pharmaceuticals called sulfonamides, which are the amides of sulfonic acid. They are useful because they stop bacterial growth, even if they don’t actually kill bacteria like antibiotics. Some people are allergic to sulfa drugs, but this does not carry over to sulfate compounds. I’ll say that again: there is no connection between sulfa drugs and the sulfates found in your body, your dinner, or your nutritional supplements."

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Nice to know the distinction between the two. Older DS and myself have horrible response to Sulfa Drugs but great response to higher dose MSM a natural sulphur (minus herx).

 

We also have a great response to Enhansa. The amount of Advil used in our house has greatly decreased. Even DH is fearful when we run out of Enhansa because he thinks it is so helpful. If DH notices a specific supplement is working then ITS REALLY WORKING.

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Yes, the sulfa, sulfur, sulfite, sulfate thing is very confusing. But this is where I got my info on avoiding sulfur from the heartfixer document that has become my roadmap for the whole methylation thing: http://www.heartfixer.com/AMRI-Nutrigenomics.htm

 

CBS (+) individuals will be intolerant to sulfur containing drugs, nutritionals, and foodstuffs.

 

It then goes on to discuss sulfites and sulfates and ammonia.

Later, there's an appendix of high sulfur supps and foods you should avoid if you're CBS+. Tumeric is a high sulfur food. So is milk thistle, which I'd been giving to DD but stopped once I got her 23andMe results.

 

I know you're in great hands with Dr O and if what she's advising is working, then of course stick with it. I was directing my comment more toward the statement landamom started with, which was about being tired of spending $$ on things that don't work. With the info I now have, I have a better idea of why some things worked and why some didn't.

 

Your comment about the sulfa effect on your liver is interesting. My own liver enzymes were elevated at my annual physical and I need to re-check in a few weeks. The only supplement I'd added in the past year was NAC in January for a chronic cough. I stopped the NAC while I wait for the re-check. Curious to see if that's what was behind the spike.

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So appreciate all the feedback! It sounds like something worth trying, thankfully.

Laura, the 23andme test is something that's been in the back of my mind for a while now as we know dd has an MTHFR mutation. I have to say though I just feel so skeptical about it in many ways. It sounds like you have found it to be helpful? Hard to believe all that can come from spit ;) did you use the genie to translate the results? I have heard several horror stories about the yasko test... Just pages and pages of supplements. Basically completely unrealistic.

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while its hard to know exactly what's working, DD has made huge strides since adding Enhansa, NAC and Quercetin. I suspect the Enhansa has helped the most as its been the most constant of the 3. In addition, DD's mild asthma is better. There was a room that was setting her asthma off at an afterschool activity and it no longer gives her a problem. I would like to take it myself but waiting till finances settle :) Enhansa even seems to be accepted by the mainstream community as my insurance covers it (non formulary though).

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So appreciate all the feedback! It sounds like something worth trying, thankfully.

Laura, the 23andme test is something that's been in the back of my mind for a while now as we know dd has an MTHFR mutation. I have to say though I just feel so skeptical about it in many ways. It sounds like you have found it to be helpful? Hard to believe all that can come from spit ;) did you use the genie to translate the results? I have heard several horror stories about the yasko test... Just pages and pages of supplements. Basically completely unrealistic.

Yes, I used the Genetic Genie to generate a Yasko-like report. I then took my kids' results and used the Heartfixer document as a guide for what to do about each kid. The result was that I stopped some supps, added two and it confirmed that the rest were on target.

 

Someone sent me a copy of their Yasko report and I agree - I'd be very upset if, after spending $$ for her testing, all I got was a grocery list of dozens of supplements to buy, with no explanation of what the report found. What I like about the heartfixer write-up (aside from it being free) is that it talks about what each gene does and the relationship between genes and then gives specific recommendations for supplements. Now granted, it's a sample report so you do need to keep your own results in mind, but it's a pretty good starting point. You could probably get the same info from Yasko's book but it'd be a lot more work on your part.

 

I'm sorry if it comes off like I'm pushing the 23andMe. I respect the concerns about privacy and any other doubts you have. For me, having spent $75 on bottle of tinctures that did nothing (twice), $25 on bottles of supplements that were supposed to be good but didn't work for my family, the $99 for the 23andMe seems like a good buy. It will pay for itself easily. But I need to reign in my enthusiasm and realize it's not resonating with everyone.

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Wondering if anyone else has seen viral issues when fighting yeast. After you guys suggested yeast for DS as a source of his recent flare, I upped probiotics and garlic (the only tools I have until we see LLMD on Monday) and he's developed a cold. I had stopped abx last Sunday (zith+rifampin) but then on Thursday he got very angry and flipped out over the littlest things and got congested. (the past 6 weeks has only been OCD - a 3-4 on a 10 pt scale- but no anger, no other symptoms). He's now full-fledged sick and very short tempered and OCD is worse. Like you said, could be coincidence. Just wondering if it means anything. Grasping, I know.

 

She did have viral symptoms for 4 days in that time frame, but who knows if it was a newly contracted virus or not. She also complained on sores in her mouth, which was new. So, we are still working on it. I always remember what Dr. K told me years ago; good reaction and bad reaction are positive and diagnostic. No reaction/does nothing- move on.

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I thought I'd attach a Nova Episode that I watched recently as it covers the 23andMe testing in detail. I think it was a balanced episode outlining the positives of this type of testing and some of the potential pitfalls. It ranks 23andMe results against other similar type of tests, etc. Anyway, my take away after watching is its potentially a good tool for guidance in your individual health. Its worth watching especially if you are thinking about doing the test.

 

http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html

 

LLM: On my way out the door but yes... yeast treatment will kick up viral issues. I'll attach quote for you from a specific book a little later today.

 

Edit: Also wanted to mention my friend did this type of genetic testing for her Lyme/PANS son recently 'different company' and found her son had a double mutation that made him susceptible to colon and lung cancer. It was shocking information and they are fortunate to be with a Dr. that can make suggestion to help curb the probability of this type of cancer developing for her son. He is expected to be on supplements for life with regards to mutation, as well as the birth father and her. The birth father did report a family history of this type of cancer.

Edited by SF Mom

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