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So does all this information move you as doctors to no longer prescribe topical steroids for eczema patients? I feel like all my doctors/dermatologists automatically just gave me a steroid with no explanation of side effects. So if it was your kid that has eczema would you automatically give them a steroid now knowing what you know? I hope doctors know and explain this to their future patients. I’m currently dealing with it and I don’t wish it upon anyone. My experience has definitely changed the way I view doctors and medication. I will no longer just take a medication just because the doctor prescribed it. I will be sure to ask questions and do my own research before ever putting anything on or into my body.
Instead I am trying Aveeno balm - thick and creamy white As well as Vaseline due to its cooling effect and Benadryl tablets at night I also sleep with ice packs on my feet The best strategy I have found so far I will not return to the dermatologist I had better advice from the pharmacist who also told me that I am dehydrated So for that I drink lots of Zero sugar Gatorade- like the lemon flavor best Praying that this will finally work.. even if I lack melatonin or have some scarring - I hope not but as a woman i can use Westmore waterproof makeup on my legs and arms which is where I seem to have the most problems Where there is the will There is a way! Just listen to Joe Dispenza for that!
On berberine for 15 days.no change in diet at all...Just less alcohol....my life is so better..I am far away from being totally clean but itchiness, redness and uncomfortableness gone...my face still needs to get free from scaling and redness..but ehi so glad I came across this video..thanks Jennifer Fugo and dott Myles u improved my life dramatically.. cannot thank u both enough.... I hope this video can help other people like me on tsw for the past 6 years+
My 2 cents. I think I’m going through TSW and have been for about 3 years. I was using ultravate very sparingly for years. Maybe once a month or once every two months. Not frequently. Then it seemed to lose efficacy. Tried an oral steroid and got the full body effects. That lasted for months. Dr told me to start using triamcinolone and to use as much as a tube per month. Used it liberally for about a year and then it turned into the temp disregulation and crazy peeling. Finally got wise and tried to ween off. Went to the doctor for something unrelated and got an accidental dexamethozone shot. That had me homebound for about 5 months. I’m definitely of the opinion that orals and injections make it worse.
My son is 27 months into TSW - it is horrible. He stopped using the steroid creams because it didn't stop him from itching anymore. He had shingles at the same time, and tje shingles stills flare up after 27 months. He is not using anything at the moment ans suffers everyday. Dr Marvin Rappaport has been treating patients with TSW for 35 years. Thank you for your study on this horrible "disease". It is comforting to know that doctors are at last recognising TSW.
It absolutely is a horrible, drug-induced condition and this paper is hopefully a start in the right direction for more research on the matter. While many in the community have a "give it time" type of attitude, there are definitely experts out there like Dr. Myles who want to find ways to help speed up the healing process and make the journey easier (and with better education and warnings about the medication itself).
I started taking berberine weeks ago and my TSW has gotten better. Not sure if it was just a coincidence, but now I’m 😮shocked it may have been what helped me! berberine is an antimicrobial which kills SIBO. maybe that’s why it helps? Because surely intestinal bacteria is a cause of skin issues Berbarine is also anti-inflammatory and antifungal and anti biofilm
I'm glad to hear that you found berberine helpful with your condition. Berberine has many activities -- though I'd mainly focus on it's capacity to help better regulate blood sugar as well as being generally antimicrobial. Because I use berberine in clinical practice, I would be extremely careful here -- it will not "kill" SIBO, but it can help reduce certain unfriendly bacteria in the GI tract (though I do know that Dr. Allison Siebecker recommends it as one of her protocols for SIBO), but often has to be combined with other herbs to be effective and at doses that are many times higher than what Dr. Myles is suggesting. And in my 8 years of clinical practice, I haven't ever seen it be wildly effective as an anti-fungal herb nor do I ever use it for biofilm busting -- that's just not what it's really known or "good" for. I love the enthusiasm for herbs (as I also love using them with clients), but I think many of the claims people make online are way overblown and make them sound like they are nearly magical. This was one of the reasons that Dr. Myles and I wanted to have this conversation because there are a lot of things written online about berberine that we inevitably knew people would read online once the paper was pre-printed. We wanted to offer a more patient-friendly, balanced approach. I hope this adds some perspective to what you've researched!
Aloha, My son who is 16m is suffering from TSW. He is currently on vit D3 (Carlson) & Baby Probiotics (Klaire Labs) to help with his condition and Focusing on gut health rn. Child was Exposed to steroid on & off for a duration of 5 months, starting at 9m old. Child was prescribed by Dr. Oral prednisone for croup, hydrocortisone, triamcinolone acetonide, antibiotics for ear infection. How can we treat TSW in babies? What will be a safe ratio to soak in berberine?
My daughter is going through TSW and we finally realized ( about 2 months ago) that this was not her normal Eczema; her Eczema changed a little over a year and a half ago. We just thought it was getting worse. Her Dermatologist did not recognize the term at all and dismissed our theory on what was going on with her. Just so you know, since early last year she has gone through Dupixent, Rinvoq and she just stopped Adbry. We will hopefully get her into LLUMC they have an extensive Dermatology dept. that studies TSW. However, the Niacin you are talking about makes sense!!! When I was going through Menopause I started to take Niacin (which was recommended for hair loss) and my HOT FLASHES went through the roof, I stopped immediately. My daughter is not taking Niacin directly; however, she is taking Flaxseed, Quercetin has D3, Bromelain, Vit C and Zinc. She is hopefully on her journey out of this horrible disorder.
I'm glad that you figured out what was going on with your daughter! It is such a challenge at least here in the US to find derms that believe in TSW partly because there is no diagnostic criteria (which Dr. Peter Lio and other doctors are working on). I wanted to mention in regards to the niacin and flushing -- the form of niacin is what specifically matters so you (and your daughter) should necessarily be afraid of niacin found in multivitamins or food. There is a specific form of niacin that causes the flushing which may be the issue here -- that the kynurenine pathway and mitochondrial complex 1 are on overdrive increasing this pool of niacin that maybe responsible for flushing. I think a lot still has to be fleshed out with this data to truly understand it further since this is an initial investigation with a small sample size of individuals.
My daughter is living this nightmare too! She was prescribed steroids for 20 years for what we were told was chronic eczema. She is 22 and in TSW after the steroids stopped working. She spent the last 4.5 years on the Aron Regimen, which we thought was better because it was diluted. Level 8 AR has destroyed her face and was probably the cause of her perioral dermatitis to begin with. She is attempting No Moisture Treatment and Red Light Therapy in hopes of speeding up the healing process. It is brutal to say the least. I am horrified that I did not know this could happen. It truly is "eczema on steroids!"
I will be praying for your daughter. It is so hard as a parent to see your children go through this. I totally understand. My daughter is 24 and she too will be starting red light therapy hopefully within the next couple of weeks.
Our daughters need us! They will heal. All of these internal supplements are supportive, but do not thicken the skin. I am only aware of 2 treatments that can do that, red light therapy or cold atmospheric plasma therapy. RLT is easily accessible. CAP is only offered in Bangkok, Singapore, and the UK.
Wondering if taking berberine can also be helpful for those that are in the later stages of TSW? Most of my symptoms are gone but my natural face and neck colour hasn't returned and I've been pink/red since my journey started.
This is so exciting and so informative. As someone who has been through this and is now experiencing it with my child (can’t believe I’ve been talked into TS again) I want to know how we can use this information to alleviate suffering right away. Is adding berberine diluted in the bath safe for children?
Could the mitochondrial side effect of TSW have any relation to all the food intolerances/sensitivities that come with TSW as well? Or are these two different processes that are unrelated? What I can eat has become such a huge issue for me during my "battle" with TSW that I wonder if this new discovery could also lead to more understanding of why certain foods suddenly have a dramatically effect on this skin condition. Maybe something to do with the absorption of certain foods being changed or an abnormal build up occurring.
@@jd2024- Everyone is different so I don't know what would help you exactly, but I think something that could be universal is sugar being an issue. Especially after hearing about how steroids change how the body processes glucose (I think it came from one of these podcasts about steroids but I honestly can't remember anymore), I think it is best to cut back on processed sugar and simple carbs whenever possible.
Is Berberine equivalent to Turmeric? Interesting research - one would like to see a reaction video from Rappaport or Lio. (Again one cannot believe this sort of research has not been done considering the number of labs doing research).
It is Normal they trying to figure thing out...trial and error is often the way how u found out what works better... It is not ideal hearing about ..but it is what it is
