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.  



Thursday, December 22, 2016

Changes....and more changes....ALL GOOD!

I know it has been a month since I last blogged.  Shame on me!  I had a draft from 2 weeks ago but I deleted it because things have changed dramatically since then.  A few weeks ago my flare was already gone.  But the hives and itching continued after every single meal.  I have tried so many things in regards to my histamine problem.  All anti-histamines do nothing for me.  So I have been at my wit's end given I know there is a "cure" for all of this.  In my opinion I believe it is a system wide approach that begins with healing the gut.  But many of the healing gut foods are also high histamine. It's a vicious circle I've been on the last 2 years.  But I'm getting ahead here.

I'll take it back about 3-4 weeks ago.  My flare was subsiding....it really only lasted maybe 2 weeks. It only stayed on my face, neck, upper chest, and upper arms.  And I can't say it was a full TSW flare.  I didn't have an ounce of ooze anywhere.  It was just really irritable flaky skin that tore easily when I scratched.  I changed up my supplements at that point as I felt everything I was on obviously wasn't doing the whole job.  I added in milk thistle and my go to MSM powder and glutathione.  I still stayed on my active B's, but put everything else to the side.  It seemed to do the trick.  But my asthma was getting worse as well.  It all started with the change in weather.  I broke down and started taking Singulair.  It worked wonders!  Within 2 days I was no longer needing my albuterol.  It was wonderful.  Until a week later.  (At this point all men and children should stop reading....it gets personal and very female from here).  So I started spotting which was so odd.  My periods have been like a steady rock for me....always on time with a day here or there thrown off by something minor. Spotting was rare.  So here I am spotting a week before my period was due.  Then no period. I had my tubes tied years ago but took a pregnancy test anyway...completely negative.  So 3 weeks later I started with what I thought was my period.  Except it wasn't normal.  I thought I was going to bleed to death.  It was awful.  A big box of super tampons and bag of super pads gone in 3 days. Something was obviously very wrong.  So I put 2 and 2 together and realized the problems started after beginning the Singulair.  Yep....a rare but serious side effect are nose bleeds and vaginal bleeding. OY!  I stopped the Singulair that day.  In 2 days all bleeding had stopped.  It was obvious to me that Singulair was not going to work for me.  So I called my doctor and asked if I could try the Chromlyn (sp?) inhaler....it's an old preventative inhaler for asthma that is not a steroid.  Know what mu doc said?  Singulair would not cause bleeding so you need to stay on it and go see an OB/GYN.  Not even joking.  I literally almost lost my shit.

So here I was a few days ago with my asthma getting worse by the day and knowing my doctor was not on my side.  I then remember reading on the FB page about Beth White doing a lot of research on mast cells and so much more (please read up on her findings as they are remarkable!).  She had been reading up on Dr. Li's work out of NYC.  So I did some research as well and read about the Chinese herbs that Dr. Li is having amazing success with regarding asthma and allergies.  I was so amazed at her findings and how much success she is having, that I ordered my own concoction of herbs to help with my asthma and allergies.  Beth just went to NYC to see Dr. Li and I am looking forward to her results.  For me I am only taking 4 herbs that I found would be best to target my specific problems.  I only started them today and already less itching and hardly any need for albuterol.  I'm really excited about this given this is a more natural way to heal the body.  The amazing thing is Dr. Li has discovered that certain herbs will calm the immune system down to the point that some people can now eat things they were once severely allergic to.  Very excited about this!  And she is doing her research at Mt. Sinai so we may end up with some hope for all people with allergies and asthma!

Well, I need to run.  There are more changes to talk about like my new job that I LOVE LOVE LOVE!  I will also have to get some pictures up here soon!  I hope everyone has a wonderful holiday season!

Monday, November 14, 2016

Flaring?? After almost a full year TSW free...

Yeppers....that would be right....I believe I am flaring again after being flare free for well over a year or more.  About a week ago I noticed my face and neck became swollen and red.  Then a few days later the itch started and my skin just sloughed off as if there was no strong bond between the cells.  I have dealt with hives on and off the last 2 years.  I have itched and scratched with nothing more than a few dry patches developing in normal eczema areas.  But my skin never sloughed off - I could scratch to satisfaction and never tear open my skin.  Until this week.  My skin is in shreds and oh the burn!  I forgot just how painful the burning was.

The only good news I have is the flare is localized to my face, neck and a small spot on my upper arms.  It has not spread out and there is not one bit of ooze.  So is it a TSW flare??  Not quite sure.  It seems to have coincided with the weather change perfectly. And my skin has always been worse in spring and fall when mold levels are at their highest.  I do know we have mold in the house we currently live in (rental).  Only time will tell when we finally move out into a brand new home with no mold whatsoever.

For now I will classify this as an isolated flare - not a system wide or a bad flare compared to what I had suffered with in the past.  However it is definitely worse than a normal eczema flare up as it involves my whole face and whole neck.  I continue to take my supplements and have added back in the MSM powder the last 2 days.  Since I added in the MSM, my facial swelling has gone down dramatically.  So I will update more in a week or 2.  I will try to take pictures but my selfie camera on my phone is broken and I can't find my regular camera.

I do know that I can still work which I am thankful for as my hands continue to be flare free and eczema free,  It's a bit uncomfortable at work when things get super busy and I sweat a bit - then it burns more but not to the point I can't deal with it.  Also I still come home and hit the shower.  My neck burns slightly more in the shower, but surprisingly not as bad as I remember showers being during my TSW days.  It's more like the first 2 seconds are "oooh that stings", then it's over.  So again, not sure what this is - whether TSW related or just plain bad eczema/

Tuesday, October 4, 2016

Long term effect of TSW

The one long term effect of TSW that many do not think too much about is the effect long term stagnation has on the body.   I spent a solid 8 months on the couch or in bed.  My husband did most of the errands.  I did go out maybe once a month if that. I remember after I started feeling better around the 9 month mark, I wanted to start exercising. I remember going for a walk outside and barely making it half a mile.  Fast forward 2 years and my TSW is long gone but I am still very weak.  I work 36 hours a week as an ER nurse and that just about kills me.  For the last year I have felt that I could do no more, but dying to get back into shape.   I tried so many times but what would happen is I would have a few good days and then go Gung ho thinking I was ready to get back into shape.  Each time I would overdue it and then feel even weaker.  But I found I was over doing things in all aspects of my life....always trying to do too much because I felt my energy would only last a small amount of time and I NEEDED to get as much done with that energy as possible.  I finally decided about 6 months ago that I needed to slow down and start off very slowly in all things. I set a schedule for myself per se and have stuck to it for the most part.

This month I realized I have accomplished a lot in the last 6 months by going slowly.  I got my kids situated with all their schooling.  I home school them and it gets tough when I work full time but this time I prepared ahead and now we are on a good course.  I got our house in shape and I have started the process of building on our property.  I have all our papers in order and have everything ready to go once we start the closing process.

Now I am back into my healthy eating.  I put our diet on the back burner with so much going on.  But now it's time to focus on that.  So far one week down of clean eating. The kids are on board and there have been no complaints.

And now I come to the exercise thing.  I have been putting this off given how weak I've been. But I know it's time.  So I am canceling my Planet Fitness membership as I've barely used it and I feel that would only hinder me.  You see when I go in I feel like I'm going to be judged for only exercising for 10 minutes. And I end up pushing myself.   But I know I can't push myself.  It's too much for me to do more than I should at this point. My muscles are truly very weak.  So now I am going to walk outside for only 10 to 15 minutes to start.  And today I added in some weight bearing exercises. But only a few where I use big muscle groups.  I do push ups against the wall, squats with no extra weight, and bicep/tricep lifts using cans in my cupboard. It may not seem like a lot but after so many starts and failures from doing too much I figured I stand a better chance of success by going slow.

So for all of you starting to feel better, just give yourself a break if you end up like me where the energy is ever so slow to return. And don't have high hopes that things will go back to "normal" like you were pre TSW.  Some might and many will not.  You have to give your body time to heal everywhere,  not just your skin.  And you may end up having to define a new normal for yourself and your family.  Not trying to be down, but as always,  just keeping it real.

Tuesday, September 6, 2016

On the go and Eczema in all the normal places...

Wow....life sure is busy!  Working full time and even quite a bit of overtime. We are now full blown into the process of building a house from the ground up.  We are no longer going for the simple manufactured home.  We are building the home of our dreams. And that means a lot of time being spent....collecting papers, scanning and emailing said papers, making a ton of phone calls, and going to the property to meet with people for bids and all sorts of matters. While all this is very exciting, it is also very stressful.  With all the new stress, I'm no longer eating as healthy as I should. Eating a ton of carbs, sugars, and even dairy.   And that means eczema!  Not TSW, but regular run of the mill eczema.  Dry itchy skin around the ears, at my elbows,  and now back of my neck. Same places I always got it as a kid.  Every so often I take benadryl for the itching.  And of course the hives are back.... not bad like before as I'm still taking my DAO histamine pills but I seem to get hives from all the stress like when I'm at work.

Overall I'm still doing exceptionally well and no sign of TSW whatsoever.  It seems I need to REALLY focus on healthy eating irregardless of my stress or working conditions. It needs to be a priority. Unfortunately I am booked solid for the next few weeks with short term but important projects on top of work.  Then during the last week of September I will be taking a much needed break. It will be then that I take up focusing back on my health.  Back to healthy eating and exercising more that 2 or 3 times a week.  My goals are to lower my cholesterol (just found out it's 230), lower my resting heart rate (hanging in the 70s and should be 60 or below), get rid of my asthma for good (using inhaler or nebulizer only 10 to 15 % of what I was before), and lose this extra weight on me.  I would love to meet these goals by next Valentines Day.  That will be my 4 year anniversary of TSW.   Wouldn't it be wonderful to be back to what I deem as my old normal self but so much healthier without a sign of eczema, TSW, asthma, or being overweight?  I think this is obtainable even with the stress of working full time AND building a house.

To all the TSW warriors still suffering... keep fighting the good fight. Hang onto hope and never give up trying to find relief. It's worth it in the end. Believe me.