Friday, January 12, 2018

Healing Takes Time BUT....

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 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!

Thursday, July 27, 2017

A NEW CHAPTER HAS BEGUN!

So I posted yesterday about us moving and life being crazy busy and my skin is doing awesome!  But I wanted to share this next new chapter in my life because we have had to put it off due to my TSW which I started over 4 years ago.  About 6 years ago we bought 68 acres in Kentucky and wanted to build a home and start a homestead - we wanted to live more naturally.  Well we had plans t o move there in 2013 - but that Valentine's Day is when I learned about TSW and immediately (without hesitation at all) threw away every last tube of cortisone cream I owned.  My husband was behind me 100% even though we both knew we were putting our dreams on hold.  We knew I would not be able to work for an extended period of time and he would be stuck working over time just to make ends meet so I could heal.  We had to forget building our home and moving.  But here we are now.... ready to move into our new house on our 68 acres!!!! We move in 2 days!!!!  Of course we may be without electricity for a few days as the power company has been tied up with recent storm damage.  But this new chapter is beginning for us!  And it really hit home when I got the 8 am phone call that our keets were in (baby guinea hens).  I had wanted us to already be moved into our new place, but delays kept happening and the keets were already ordered months ago.  I will post pictures and videos of them soon.  But for now, here is the link to our very first video introducing us and our new homestead.

https://youtu.be/VvRak9rcx1M

You will see in the video that my skin is clear.  I look tired as I'm currently working nights and that has taken a toll on me.  But I am so happy that we are finally here!!!!

Wednesday, July 26, 2017

Healing Continues and MOVING!!

My healing journey continues - I have been free from TSW for quite some time.... about 2 years.  But dealing with the extra weight, the asthma, and itty bitty patches of eczema are on my to do list when it comes to full healing.  I have had to put off my healthy eating and such for some time given we are moving (finally) to our 68 acres here in Kentucky.  Our house is just about done.  All we have left to wait for is getting the electricity in.  The power company has had to deal with emergencies from recent storms which has delayed us.  BUT electricity or not, we are moving our stuff in this weekend. We will stay here at our rental house until the power is all in.  So there has been a lot of stress dealing with putting a house on a piece of land out in the middle of nowhere.  But we persevered and here we are getting ready to move!  So excited!!!  My skin has been wonderful and have had very little asthma - in fact it bothers me once every 3-7 days, depending on what I'm eating.  For the most part, I think I have it nearly cured....but need to be on a strict diet for 3-6 months and find the appropriate probiotic that won't cause hives.  Otherwise....I have a tiny patch on my right wrist and a dime size patch on my chest.  Personally I think it's yeast related as almost all my eczema cleared up when I started the caprylic acid.  But going sugar and carb free for a short time should do the trick.

In order to eat right and whatnot, I need not to be under so much stress.  I'm a realist so I knew my diet was not going to be the best during this time.  Hopefully once we move and get somewhat settled, I'll be able to focus on eating better.  In the meantime, I took off next week from work so I can get the house somewhat settled.  We can't afford the new furniture we want right this minute, so we plan to buy one or 2 pieces at a time.  Unfortunately we have a ton of things to buy out of pocket right now, so furniture comes last.  Our garage won't be put up until end of August and our front deck in the fall.  We also have to put up fencing for the dogs, and homes for the future chickens and guinea hens.  Actually our guinea hens are coming in tomorrow so we will have to deal with them while also moving - bad timing but such is life.  They weren't expected to ship until first week of August, but coming in early.

Just so everyone knows, I will from time to time update here on this blog, but planning on starting a homesteading blog and video series (on starting up a homestead).

That's it for now...hope you all are having a decent skin day!!


Hubby and I out to dinner a few weeks ago


Our house in some stage of being set up.


Me and my youngest a few months ago 


The sunset from our property


The kids enjoying some nice weather this past spring on our land.

Friday, June 16, 2017

Relief at last!!!!

It's been a while since I've written.  Things have been busy as always!  Almost ready to move onto our 68 acres with a new house.... probably in about a month.  I'm working full time back in the ER and absolutely NO skin break outs on my hands since last year!! My biggest thing in the last 2 years have been the hives and asthma.  I couldn't shake them. Even with the l-glutamine which helped over 80% with my asthma, it was still there.  I had been taking custom probiotics but still having hives here and there.  So I finally decided to attack the Candida I felt was responsible for my inability to heal all the way.  For the last month, I took colloidal silver 4 times a day and caprylic acid 2 to 3 times a day.  And within 2 weeks my asthma and hives disappeared.  I've literally used my inhaler once in the last 2 weeks.  And no hives. I have only minor dry skin and I might itch slightly after eating dairy and gluten. Mind you, I did not alter my diet and have been eating horribly.  Working nights in the ER brings on a lot of stress and I eat when I'm stressed.  Trying to change that but not having luck.  Think I'm just going to have to wait until after we move to focus on a more strict all natural diet. I'm just too busy to make that a focus.

But here are some pictures of my arms and hands... where I was having problems with normal eczema from dairy and gluten. The skin is still dry and old looking.  But no eczema or itching.  In order to truly clear everything in terms of dry skin, itching, and the occasional breathing problem, I need to go completely sugar free for 3 months and take the caprylic acid during that time.  This will be my final goal to getting rid of the slight itch and the extra weight I still carry on me.

I am 4 years TSW.  I've had to take oral steroids once for my asthma about 1.5 years ago.  Otherwise no steroids.  I am so thankful to be where I am now.  With 30 years of TS use, I don't think I should be this well off if I just let time be the only way to heal.  Steroids in general will cause yeast to overgrow.  This is well documented in the medical world.  So it behooves those of us subjected to years of steroid use to address a yeast overgrowth in our bodies.  I wish I had addressed this sooner in my journey but my mind was not working right with all the pain I was in during the first year.

So here are some pictures of my dry but mostly clear skin.





Wednesday, March 22, 2017

Everything is Coming Together

First off, all is well....very well!  No more asthma, skin is almost 100% clear, and I only get hives about once a week or so.  Itching is WAY down...I now sleep without any benadryl or any antihistamine for that matter.  I itch maybe twice a day if that and it's very minor and sporadic.

Here is what I am doing...I did a 40 gram a day trial of l-glutamine for a week and then tapered down to my current maintenance of 10 grams a day.  I take this for gut healing.  Within 4-5 days my asthma symptoms improved dramatically.  And I am currently not taking anything for asthma - haven't needed my albuterol in over a week.  I then started a new probiotic that got rave reviews for people with histamine issues like many of us have.  It's called Custom Probiotics and I take the 6 strain one.  It supposedly has the probiotics that highly benefit the gut but are lower in histamine than many others.  It's VERY expensive.  $100 for one bottle.  I'm not joking and would have cried snake oil had I not tried it and saw a difference that very same day.  My first reaction after taking one adult scoop was to almost vomit and have diarrhea for a few hours.  I then cut back to 2-3 pediatric doses and then worked up to the adult dose.  With taking this, my skin has become almost 100% itch free.  I would put my itching at about 1-2 % right now.  I get a few twinges a day but no frantic itching.  Oh and the BIG kicker...I can now have dairy and gluten with no asthma or itching!  And the hives are almost gone.  Had a few yesterday and that was the first time in over a week.  They lasted all of 30 minutes and went away on their own.

So why are probiotics so important?  Here's the thing.  As a nurse, I know that steroids when taken on a long term basis (orally) can lead to a depressed immune system and fungal/yeast infections.  Why couldn't topical steroids do the same?  Especially when slathered on daily for 30 years?  So when the fungal/yeast count goes up in the body, one is prone to skin problems, especially itching.  And if one also is placed on multiple courses of antibiotics over many years, that kills the good bacteria as well in the gut, allowing the yeasts to grow and multiply rapidly.  See the problem?  Now taking probiotics alone will not fix this.  Maybe taking excessive amounts might do something but there are more healthy ways to balance everything out.

This has led me to where things started coming together in my head.  You see, many years ago when I first started trying to eat healthy and researching eczema, I came across the hype of candida overgrowth...I had all the symptoms and went on a mission to naturally kill the candida.  I took caprylic acid, ate lots of garlic, and tried to curb the carbs and sugar.  But I never succeeded.  I kept right on itching...and I felt worse than ever.  I did this for over a year.  Then I stumbled upon the Maker's Diet and went on that (no sugars or carbs for 1-2 months) and started back on my milk thistle.  I lost over 50 lbs in 2 months, stopped itching, and looked and felt great.  I was applying scant amounts of TS I believe to my arms now and then, but basically had not been using them very much as they never seemed to help.  I spent 2 years feeling good and getting great sleep.  Then I returned to work and started eating bad again and started amping up my use of TS again and lo and behold gained 50 lbs back and kept getting worse.  Then I found out about TSW and went off all steroids (4 years ago now).

My TSW got better with the gene mutation treatment but I still had chronic hives and itching.  And my asthma kept getting worse.  It felt like I wasn't getting anywhere.  I went back on the Maker's Diet to no avail.  Tried the GAPS diet and again no significant changes except in my asthma as my asthma seemed directly linked to what I ate.  Took milk thistle to no avail.  Still itched and itched (although thankfully no longer TSW skin so wasn't tearing my skin apart - just normal eczema).  Then I read that fermented foods and drinks (important part of the GAPS diet) can actually make candida worse. And that candida overgrowth will cause generalized itching and eczema.  And here's the kicker... I read that when one takes anti-fungals, the candida that die release horrible toxins that need to be processed through the liver.  If the liver is not functioning properly, then itching can be a symptom of an overburdened liver.  Hence, milk thistle or other liver cleansers are critical to take when taking anti-fungals.  And that's how it all came to me the last few days...when I was taking the anti-fungals years ago, I was not taking a liver cleanser.  When I started the Maker's Diet and milk thistle after I had already taken a year of anti-fungals, I cleared up miraculously and just attributed it to the diet and milk thistle (and probiotics I was taken at the time).

So while gut health I believe is critical in getting the immune system to function properly, one has to approach this carefully or disappointment will ensue.  I know many people who tried GAPS while in TSW.  A few did very well while many did awful and got only worse.  Makes perfect sense... the ones who did well probably only had a small candida problem from the TS.  While the ones where it made them worse probably had horrible candida - the more ferments they ate, the more they were feeding the candida.

I personally would recommend a good naturopath or functional doctor.  Yeast in the blood stream is rare so a stool sample is the best way to measure the levels of candida in the body.  Since I have seen my share of alternative practitioners and have tried so many things, I think I have finally come to the near end of my chronic health problems and can go it alone on this.  I have started back on caprylic acid and garlic while increasing my milk thistle.  I also wanted to try large doses of vitamin C but broke out in horrible hives with the vitamin C powder.  So now I just juice my own grapefruit and oranges at home daily for fresh vitamin C - not going to get the large doses I wanted but should get enough to boost my immune system.  I take the l-glutamine daily with the 200 billion probiotics daily.  I also take my hydroxy B12 and folinic acid for my MTHFR mutations.  I also take a few drops of sea-adine in my water for my thyroid which is on the low end of normal functioning.  And I take a few other supplements like magnesium, zinc, vitamin E, and B vitamins that have B12 and folic acid missing. Currently I'm very tired...killing yeast is taxing on the body and causes fatigue.  But I know it is only temporary.  I figure I should have my good energy back within a week or two.  I'll keep you all posted!  I do have pictures - but they are on my phone and I'm feeling lazy tonight - so I will post this blog post in the Facebook TSW page with my current pictures of a nice clear face and neck!  

Saturday, December 31, 2016

PICTURES & Starting GAPS Diet

Things are going about the same - asthma is still better but not completely better.  Using my nebulizer or inhaler about 3-4 times a day.  Skin is irritated in small areas - neck, arms, and tiny sections of face.  Hives are better since starting the Chinese herbs but again, not completely better.  I have known in my heart for a long time that clean eating is the one step I MUST take in order to fix these issues permanently.  But it can't be haphazard clean eating like I do - 70-80% clean and 20-30% crap.  It's an all or nothing approach in order to turn the tide of my gut and immune system healing.  That has led me to the GAPS diet - the one diet that has shown to reverse autoimmune health problems.  I didn't try GAPS when in TSW - GAPS will cause massive detoxification of the body and since the skin is the main detoxifier, it was not a good idea to aggravate my skin even further.  So now that my skin is strong and has been able to handle me working full time, it is time to attempt GAPS.  I have started a new blog for this journey alone, just like my TSW journey.  I will continue to update things here but not as often.  You can follow me here:


Here are pictures from the last 2 days....as you can see my skin is strong and relatively healthy.  My patches of eczema and irritation seem to stem from my diet as it gets better or worse depending on my dairy and gluten intake.  Hopefully GAPS will fix this issue once and for all.  


As you can see, my forehead and chin both have small patches or irritation as well as my cheek.  They are small and not bothersome.


The other side of my face is about the same.  No obvious swelling or redness.


My neck is probably the worst area - instead of patches, I have lines of irritation.  Very weird.  Other than the area around the lines, no other redness or swelling.  It feels like regular eczema to me and nothing at all like TSW.


My right arm is the worst out of both arms.  But still nothing horrible - just scabs from where I scratch the hives - no red arm/sleeve.  


My hands are dry and have very tiny cracks from the weather I'm guessing.  You can see where I scratched at the dryness of my hand.  


Left hand same as the right.  


And the only area on my legs that is irritated - one small tiny spot.