I have been seeing quite a few posts on people suffering terribly 2, 3, and even 4 years out after starting TSW. This makes me upset and sad as I truly believe there is a way to lessen the suffering and aid the body in healing. I still believe most people with TSW suffer from a genetic mutation that inhibits glutathione production. Glutathione is ESSENTIAL for cellular healing. Without enough of it, we cannot possibly heal from the years of damage topical steroids caused us. I used topical steroids for 30 years in all strengths and all over the body. My TSW the first 8 months was agonizing, painful, and caused me to not be able to work and most days not get out of bed. I went to a naturopath that discovered I had serious genetic mutations like MTHFR. He immediately started me on intravenous glutathione. Within 2 weeks I was able to return to work and I had my life back! At the same time, I also started moisturizer withdrawal as some of the mutations I had prevented my body from properly breaking down chemicals - so I was reacting badly to all the chemicals in the lotions and creams. Even the natural ones, my body still had a hard time processing. So the combo of moisturizer withdrawal and glutathione I believe was a lifesaver. I also took large doses (15-20 grams daily) of MSM powder which I noticed was crucial in drying up the ooze.
I just came off a month long flare after almost 5 years TSW. I started on oral glutathione (1000 mg twice daily) and 4-5 half mouthfuls of colloidal silver daily which was crucial for me to not itch so bad and reduce the flare's intensity. If I skipped a few days, the itching got worse and so did the burning. But it is now on its way out the door and I never missed a day of work during this flare as it was no where near as bad as my original flaring.
As for the colloidal silver- it is a natural antibacterial, antiviral, and antifungal product. There are enough studies out there that show steroids cause an increase in fungal infections in people. I do not think this is any different for people who apply steroids. After 30 years of use, I suspected I had a fungal (or candida) overgrowth throughout my body. I take colloidal silver about once or twice a year for at least a month long in order to help fight the candida. This is also a crucial step in helping a lot of people with fungal or viral infections that people with TSW get. Everyone should definitely do their own research on taking colloidal silver internally. I did at least 6 months of research on this years ago before I ever took it - I felt it was safe for me and have never experienced any side effects from it. In fact my most recent use of it seems to have cured my asthma and chronic hives. I have always used Sovereign Silver brand - but recently tried another brand and my asthma returned. So I do believe the brands make a difference.
While I used other supplements during my healing, I believe that if anyone with ongoing bad TSW would try the following, I believe they have a decent chance of getting some relief during their flares. So many people have already found relief with supplements for their genetic mutations - but I'm a realist and know that the testing and seeing a naturopath are super expensive and we have all tried so many products.
1. Moisturizer withdrawal - this is painful the first week - I know because I went through it - but the benefits are worth it. Try one area at a time if needed. But keeping the skin clogged with products (natural or not) does not give it a chance to heal and breathe.
2. Glutathione - research this first. It should not be taken for longer than a month without a break (1- 2 weeks) so your body does not become dependent on it and stop producing its own. I took 1000 mg twice a day for my recent flare and that seemed enough. Make sure to research safe doses.
3. Sovereign Silver - again research this before trying. I found taking half a mouthful 4-5 times a day for a month was super beneficial.
4. MSM powder - I started at 3 grams a day and worked up to the max of 20 grams a day divided into 2 or 3 doses to stop the oozing during my initial flares. Did not ooze with this recent flare so have not taken it in last 3 years.
These products were easily found on Amazon for decent prices. The most expensive was the silver, but since it has fixed my asthma, I find it well worth it. I know we should not be giving out advice for TSW as so many have tried so many things only to be disappointed. However I have done so much extensive research on TSW and these products. I feel as if we have a way to at least get a little bit of a break from the more painful symptoms by aiding the body in what it is missing.
Friday, January 12, 2018
Friday, January 5, 2018
Almost 5 Years AND..... A FLARE!
Hello all fellow TSW folks! It has been over 5 months since I last wrote... it has been quite a last half of 2017! We moved into our new house on our 68 acres in Kentucky beginning of August. It was a rough few months after that as one thing after another seemed to fall apart... all NEW things mind you! We had a septic pipe burst, a cistern that leaked, a well that was producing both water and gas, and numerous other failures in the house (like air conditioning during 90 degree weather). To top it all off, I ended up in the hospital for severe female bleeding that required me getting 3 blood transfusions back to back. All of this went on while my husband was working in NY to pay for all this. He kept insisting on coming home after everything kept going wrong, but I told him I had this! And I did - even the over night stay in the hospital - the kids were fine as they were used to me working 3 nights a week so they are self sufficient at this point. All through this stress, not a single flare! Skin stayed good and I even figured out how to fix my asthma and chronic hives (healing the gut by starting off with months long use of colloidal silver and then high dose probiotics).
So where does the flare fit in to all this? Right after Thanksgiving, when all was finally settling into place and things stopped breaking....I was at work one night and felt this sudden heat on my face with a prickly, itchy sensation. And I just knew right then and there I was starting a flare - don't know how I knew as I don't recall other flares starting in the same fashion. However, my face was very red and everyone at worked kept asking me if I was OK. It went away within a few hours. But then I started with some on and off itching on my face, neck, and arms. It was small at first and the itching episodes would last about 1- 5 minutes at a time. But it was the CRAZY all consuming itch of TSW! I was a bit nervous and a whole lot pissed off! I have not had any major flares since 8 months into TSW when I started the glutathione IV injections and other supplements for my gene mutations. I had had what I called mini flares - flaring in one area of my body only - one arm, the neck, the hands, etc. But here I was nearly 5 years TSW (anniversary is Valentine's Day), and I was flaring on my face, neck and arms all at once. BUT, and here's the big but....it was not a repeat of my initial flares by any means! Here is what my initial flares comprised of: Itching, Burning, Swelling, Redness, Oozing, and Macerated skin. This flare is limited to: Itching, Burning, and (slight) Swelling. Not a drop of ooze, no further redness past that initial facial redness, and no macerated skin. When I scratch, my skin does not just fall apart - I end up with sores all over, but the skin in between the sores is very much intact and not even red. This is a far cry from what my initial flaring was like and is in no way shape or form unmanageable. I have had about 6 or 7 nights of having to sleep with an ice pack on my neck for comfort. Otherwise, I tolerate the itching episodes just fine and the small amount of swelling I have is not an issue. The burning is also tolerable and goes away completely if I take some ibuprofen.
This flare is still ongoing and has ever so slowly moved on down to my chest, abdomen, back, and now legs. My neck still has slight itching here and there with a few scabs, but no longer any burning. My arms are the same and need to heal still. Most of my itching is now on my back and legs. But I do believe the itching would be way worse if I had not started back on my glutathione pills. I skipped a few days in December when things got crazy for the holidays, and my itching was way more intense. Glutathione and probiotics are the only supplements I am currently taking. I have just started my new year's healthy eating diet this past week and plan to throw in some diatomaceous earth just to help knock out the candida I know I've been fighting all these years (due to 30 years of topical steroid use - steroids weaken the immune system and candida is an opportunistic yeast that will take over - which was probably the main cause of my asthma and chronic hives).
I haven't taken any pictures for lack of time. Plus there really is not much to see... just a bunch of sores in various stages of healing. Life continues to go on and I have not slowed down too much because of this flare. Maybe a few days I was more tired than normal from itching during the night, but I no longer wake up to itching as long as I keep on my supplements. Also I have had a 24 hour stomach bug right before Christmas, and now am getting over the flu. So being tired is more likely from being ill than from this flare. Also my flare was not worsened by being ill which is a good thing I might add!
The rest of my life is truly amazing! My hubby came to Kentucky right before Christmas and found a full time job 40 minutes away at the same place I will be working! I have left ER nursing as of last week and starting Monday I start orientation as a labor and delivery nurse - I feel after 20 years of nursing, I need some positives in my work day! Our farm is coming along... we have 18 guinea hens free ranging all over our property, 18 chickens that will be ready to lay eggs in another month or 2, and garlic planted. FYI - the chickens are free range as well. We finally have the gas leak fixed in our well and now have fresh well water! I truly feel blessed in life - TSW was a horrible thing to go through, but being on the other side (even with a minor flare), I feel like I have my whole life ahead of me. I no longer have to suffer and wonder why my skin was always falling apart. I have the reason and the tools necessary to fight this and get rid of it. It no longer controls me - life is moving on and upwards!
If you have any interest in seeing what homesteading is like for beginners (us), you can check out our FB page that has lots of pictures and videos. We are having so much fun, we needed to share with our family and friends and of course, the rest of the world!
https://www.facebook.com/scarpullafamily/?view_public_for=867519259981333
Everyone still going through the harsh times of TSW - keep at it - it does get better! Do not lose hope as the future is bright indeed!
So where does the flare fit in to all this? Right after Thanksgiving, when all was finally settling into place and things stopped breaking....I was at work one night and felt this sudden heat on my face with a prickly, itchy sensation. And I just knew right then and there I was starting a flare - don't know how I knew as I don't recall other flares starting in the same fashion. However, my face was very red and everyone at worked kept asking me if I was OK. It went away within a few hours. But then I started with some on and off itching on my face, neck, and arms. It was small at first and the itching episodes would last about 1- 5 minutes at a time. But it was the CRAZY all consuming itch of TSW! I was a bit nervous and a whole lot pissed off! I have not had any major flares since 8 months into TSW when I started the glutathione IV injections and other supplements for my gene mutations. I had had what I called mini flares - flaring in one area of my body only - one arm, the neck, the hands, etc. But here I was nearly 5 years TSW (anniversary is Valentine's Day), and I was flaring on my face, neck and arms all at once. BUT, and here's the big but....it was not a repeat of my initial flares by any means! Here is what my initial flares comprised of: Itching, Burning, Swelling, Redness, Oozing, and Macerated skin. This flare is limited to: Itching, Burning, and (slight) Swelling. Not a drop of ooze, no further redness past that initial facial redness, and no macerated skin. When I scratch, my skin does not just fall apart - I end up with sores all over, but the skin in between the sores is very much intact and not even red. This is a far cry from what my initial flaring was like and is in no way shape or form unmanageable. I have had about 6 or 7 nights of having to sleep with an ice pack on my neck for comfort. Otherwise, I tolerate the itching episodes just fine and the small amount of swelling I have is not an issue. The burning is also tolerable and goes away completely if I take some ibuprofen.
This flare is still ongoing and has ever so slowly moved on down to my chest, abdomen, back, and now legs. My neck still has slight itching here and there with a few scabs, but no longer any burning. My arms are the same and need to heal still. Most of my itching is now on my back and legs. But I do believe the itching would be way worse if I had not started back on my glutathione pills. I skipped a few days in December when things got crazy for the holidays, and my itching was way more intense. Glutathione and probiotics are the only supplements I am currently taking. I have just started my new year's healthy eating diet this past week and plan to throw in some diatomaceous earth just to help knock out the candida I know I've been fighting all these years (due to 30 years of topical steroid use - steroids weaken the immune system and candida is an opportunistic yeast that will take over - which was probably the main cause of my asthma and chronic hives).
I haven't taken any pictures for lack of time. Plus there really is not much to see... just a bunch of sores in various stages of healing. Life continues to go on and I have not slowed down too much because of this flare. Maybe a few days I was more tired than normal from itching during the night, but I no longer wake up to itching as long as I keep on my supplements. Also I have had a 24 hour stomach bug right before Christmas, and now am getting over the flu. So being tired is more likely from being ill than from this flare. Also my flare was not worsened by being ill which is a good thing I might add!
The rest of my life is truly amazing! My hubby came to Kentucky right before Christmas and found a full time job 40 minutes away at the same place I will be working! I have left ER nursing as of last week and starting Monday I start orientation as a labor and delivery nurse - I feel after 20 years of nursing, I need some positives in my work day! Our farm is coming along... we have 18 guinea hens free ranging all over our property, 18 chickens that will be ready to lay eggs in another month or 2, and garlic planted. FYI - the chickens are free range as well. We finally have the gas leak fixed in our well and now have fresh well water! I truly feel blessed in life - TSW was a horrible thing to go through, but being on the other side (even with a minor flare), I feel like I have my whole life ahead of me. I no longer have to suffer and wonder why my skin was always falling apart. I have the reason and the tools necessary to fight this and get rid of it. It no longer controls me - life is moving on and upwards!
If you have any interest in seeing what homesteading is like for beginners (us), you can check out our FB page that has lots of pictures and videos. We are having so much fun, we needed to share with our family and friends and of course, the rest of the world!
https://www.facebook.com/scarpullafamily/?view_public_for=867519259981333
Everyone still going through the harsh times of TSW - keep at it - it does get better! Do not lose hope as the future is bright indeed!
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