Monday, April 28, 2014

Here goes...the BIG update!

This is a long time in coming....just needed to clear my head for a few weeks to digest everything.  This may be discombobulated to some extent given how much I want to say.  I have been trying to organize my thoughts, but there is just way too much going on at the moment so I figured I would try to just start writing and see how it goes...

1.  Life changes:  For those following from the beginning, some of this will be old information.  My husband and I bought 68-70 acres of land in Kentucky over 3 years ago.  It is our dream to build a home there and have a small farm.  About 20 acres or so are open land and the rest forest.  We have talked to many people over the last few years about getting a modular home placed on the land, but given the road to the property is only wide enough for one vehicle - getting large equipment and whatnot down the road is going to take a lot of renovations.  This of course means a lot of extra money.  Well with me being out of work for a year, the money is no longer there.  Once I get back to work, we should be ready to build in a few years.  A month ago we went to Kentucky to interview for jobs and look at homes to rent - we figured if we lived in the area, we can do a lot of the land renovations ourselves over time saving more money.  Well unfortunately the pay rates for the jobs there are significantly lower than where we are in NY.  The lower cost of living does not make up for that difference as certain bills will not change with the move.  This was a depressing realization and one we were anticipating, but we were still hoping for the best possible outcome.   Now I just have to get back to work ASAP so we can pay off those fixed bills and then be able to move.   This one thing alone has caused me a lot of time off the computer as I needed time to process my health, our job situation, and of course our future.  Our dreams have been on hold for so long due to my health that I needed a time to truly grieve what I perceive as years lost.  It is a good thing I am an adaptable person and can brush things off and move on.  I am now moving on.

2.  Education:  I have signed up for a 1-2 year course for medicinal herbology.  I want to continue helping people, but since I do not agree with a majority of the modern medicine model, I want to start getting an education on alternative treatments.  I had considered a degree in naturopathic medicine, but figured I would start small for now.  I plan to grow my own herbs on our farm in Kentucky when we do eventually move.  This is something I will transition into over time - from nurse to holistic practitioner. 

3.  Criticism:  Many people think I left ITSAN because of the donation incident.  I explained in another post that this was not the case.  There have been a lot of statements of criticism towards me that do not sit well with me - and if you do not believe in debates or addressing negative criticism, then please do your blood pressure a favor and do not read any further. 

* Kristina said: "If someone isn't able to donate money, I get that (all the ITSAN admin do), but then at the very least, don't sit and debate it with others on ITSAN's forum and blog about it. That just causes more work for the admin and confuses people who are just joining ITSAN's forum and trying to get the help they deserve. Maybe that time can be better spent helping others on the forum or volunteering for ITSAN."
         I will reiterate here that I was trying to HELP.  I saw a plea for donations that came across as dripping with guilt - I see that as counter-productive and wanted the board members to know that from the perspective from someone still in a lot of pain, it can come across as heartless and make people want to leave, not stay and donate.  I was trashed for this by more than one person and then threatened with a ban for undermining the administrators.  I did not see how this could be confusing to new members.   What I see that is confusing is having threads deleted over and over for censorship reasons.  When I was new to ITSAN, this confused the hell out of me.  I would see a thread one day and see a little bit of controversy but nothing major in my mind.  Then the next day the thread was completely gone - no explanation or anything.  I went over the rules and knew that censorship would take place but I was alarmed at the number of threads and posts that were being deleted.  This is more confusing than keeping the content open and allowing people (GASP) to THINK for themselves.  And as for helping others on the forum- I did a lot of that. 

*Kristina said: "ITSAN's admin have worked their butts off -- literally night and day -- sacrificing way more than we probably should be at times. That is maybe what people should focus their attention on instead of nitpicking what the admin. does or doesn't do, what the website entails or doesn't entail."
         You are absolutely RIGHT in that you all have worked your butts off for ITSAN in order to help others.  There is no argument there and I have said this repeatedly.  The mission of ITSAN is a good one.  I am not disputing what you, Kristina, have personally done to help others as I know you have gone above and beyond.  This is not a personal attack on you even though I am sure it feels that way.  But I can assure you it is not.  I am arguing some valid points that I feel are serious flaws with ITSAN.  All organizations (just like people) have flaws.  It is something that cannot be prevented.  Criticism - especially that which is directed at wanting to improve an organization should be welcomed, not shut down and erased.  As a private forum, ITSAN has the right to censor anything it wants to - and that is fine with me - I just choose not to agree with that and chose to leave because I did not agree with a lot of things.  Here in the U.S., if we do not agree with a law, we can choose to live with it or we can choose to elect people who will change it.  We have choices and ways to go about making changes.  I had wanted to leave ITSAN many times all last year due to what I felt was bullying and unnecessary censorship.  I know I am not the only one to feel this way and I know I am not the only one who has left voluntarily.  I stayed to help others but over time realized ITSAN's policies went against my ethics and ideologies.  Just because I agree with the basic mission does not mean I have to agree with the whole of the organization. 

*The following quotes are from Tracy - another board member of ITSAN:

"So I made a plea for donations as a forum post. It really did come from the heart."
           There must be a lot of anger in your heart for accusing people of having money but choosing not to donate it to ITSAN.  Making people feel guilty does nothing to help your cause.  It only preys on the weak minded.  Yes you suffered for a long time and have reason to be angry because of that, but don't take it out on those seeking help for the same suffering.  Pleas for donations should be professional.  But again, ITSAN can do what it wants in this regard - I just choose to disagree with these tactics. 

"I think the operative idea is that we don’t have any PROOF that treatment x or y hastens healing because we haven’t yet taken any ideas to any research entity to formally test in double-blind studies.  "
             Yes but you have no proof to state that time is the ONLY healer.  Just because answers have not been found and researched with double-blind studies does not make this statement true.  All you can state that is true is that you know of no treatment YET that will speed up TSW.  This is the nitpicking I think Kristina was referring to, but words can be very powerful and to say that nothing but time heals is very detrimental to the psyche.

" What do you do when somebody starts posting things like, you’re all a bunch of scumbags and losers?"
             Well JackBeNimble did this exact thing and basically said he hated most of the people on the forum - those that don't donate I am assuming.  He called people leaches and scum.  But you did not even respond to him publically and tell him this was not acceptable.  You wrote posts after his hateful ones - you might as well have agreed with him.  It was disturbing to say the least.  I am sure given he is such a regular contributor (according to him), he will not be banned for making hateful speech. 

*Dominic stated: " I just received my genetic tests back and I have tested negative: MTHFR C677T -/- and MTHFR A1298C +/-. Dr. Ben Lynch says "Again, a single copy of A1298C MTHFR does not appear to be harmful unless it is combined with the C677T MTHFR snp – known as compound heterozygous."'
             The MTHFR A1298C +/- is still a POSITIVE result.  "Does not appear to be harmful" does not mean it doesn't affect our healing.  Obviously more research needs to be done.  But a single copy of any mutation is still a positive result.  This has affected the poll negatively.  You are asserting false information for what benefit, I do not know. 

There have been posts on Facebook stating that the active B12 and active folate can be harmful to your health.  Apparently posts on ITSAN regarding these have been taken down.  I have researched this and cannot find where the over methylation is harmful to one's health.  Yes it causes side effects which I have posted on.  But harm is not done due to the fact that once someone stops taking the vitamins, the side effects go away.  Harm would be causing damage in that stopping the vitamins would not stop the side effects for an extensive period of time.  This is my own opinion on what constitutes harm. 

What bothers me the most is people are re-stating this as if it is fact without doing the research themselves.  Side effects are not the same as harmful effects.  Not all side effects are harmful.  Let's look at immunosuppresants.  They cause significant side effects - some of which are very harmful, some are not.  They can cause severe liver damage.  Once stopped, the liver may regenerate new healthy cells, but it will remain damaged for some time (with a small chance of long term damage).  I was offered cyclosporin by my derm.  I of course refused as the steroids already did damage to my liver and I had gotten it back to normal function.  Was not about to damage it again.  But people are allowed to discuss immunospressants on the forum.  Shouldn't any and all talk about them be banned due to how dangerous they can be?  You see someone said on Facebook that people need to be protected from harm - by censoring what is allowed to be discussed, then there will be no herd mentality to try something that may be dangerous.  Even Tracy himself said that he tried vitamin C injections and hot saunas out of desperation.  Do I think he needed to be protected from himself?  Hell no.  We as individuals have the ability to think for ourselves and to make our own decisions.  If one is stupid (yes stupid) enough to try something without first researching the benefits and potential side effects and/.or harm, then one deserves what they get.  I do not think anyone needs protecting unless they are severely mentally challenged.  By some people's account - that would mean most of society is mentally challenged.  I however believe we are responsible for our own decisions.  I took full responsibility when I chose to get IV glutathione.  My ND recommended it for a few weeks.  I didn't take him up on it that same day or even that same week.  I spent hours researching it before making a decision.  A TSW vet - Jake did Vitamin C injections.  I researched this as well and decided against it for myself.  No one forces us to put anything in our bodies or to try certain treatments - we as individuals make that decision and anyone keeping information from others to "protect" others is a socialist and even Nazi like mentality.  Do we as a people in general need protection from certain things?  That's another debate for another day - there is a fine line when it comes to censorship.  Censoring pornography or hate speech is one thing, censoring information on how something helped someone is crossing the line unless it has been PROVEN that that information is indeed going to cause significant bodily harm.  Saunas can be beneficial to some, yet harmful to others but there is no worldwide ban on them.  I say let people have all information that is not deemed life threatening and let them make their own decisions. 

As for taking the time to debate all this - I really don't have much time on my hands right now with all that I am pursuing.  But I find that staying silent is no longer an option for me on many levels.  I used to be of the mentality of "Why vote?  One vote can't possibly make that much of a difference".  And "Why say anything?  My voice isn't that important." 

I'm here to say that one voice is important!  Each and every one of us have the potential to make a difference in this world.  We either choose to stay quiet and not stir the pot - or we can be brazen and bold and stand up for what we believe in.  I have only just found my voice in the recent years.  I was quiet and hated arguments and debates.  I now realize that was not a good way to be (for me that is - we each have to make this choice and no one choice is perfect for everyone).  Some people think I shrank out of the online world for the last few weeks because I was hurt by all the discord and conflict.  Yes I was hurt, but that is not why I stepped offline.  I was hurt, angry, and sad.  And I needed time to think all these things through.  Typically I can think quickly on my feet.  However with the recent life changes and depressing decision of not being able to make our final move to KY, I knew I needed time to process things.  I have a very thick skin when it comes to insults.  I have been sexually harassed, hit, spit on, and verbally abused  - and all that just at work.  I'm not allowed to sue for such things as they are part of the job dealing with the imperfect physically and mentally ill public.  I learned a long time ago to shrug that stuff off.  I have also written an article about my distaste for further gun control in this country on CNN - we are talking thousands of responses (many of them were deleted by CNN due to graphic content) - some were really bad calling me a horrible mother and whatnot.  Others thought my stance was great.  Then there were the in betweeners.  There were people who agreed with me on no more gun control but didn't like certain things I said.  That was constructive criticism.  There was so much of it, I have made a tentative plan to write a book - based on these criticisms alone as many people had a lot of good points.  I sat there on the day it was published online and was awed by the sheer number of responses.  I even saw some of the graphic insults just before they were deleted.  Not pretty, but not once did I get upset or take any of it personally.  I can take criticism and a lot of heat.  If I'm wrong, I'll admit I'm wrong/  If I think someone else is wrong - I may say so, but only if I have a good enough reason to say anything at all. 

So anyone can sit here and criticize me for wasting time debating what they feel is a moot point.  You can criticize me for writing anything really and I frankly just don't care.  I write for many reasons.  To share information, to help others, and because I enjoy getting my thoughts out there.  People don't just want words to coddle them.  Some people who are suffering actually want to read about something other than suffering.  They want to feel alive.  They want to discuss and debate issues but maybe are too tired to do so, but like to read others doing so.  Kristina asked me why I was saying negative things about ITSAN yet still encouraging people to stay with them.  "Why even write a public post like this -- to confuse people? or/and to make yourself feel better?" she asked.  Definitely not to make myself feel better or confuse people.  Simply I just want information to be shared and allow people to make their own decisions.  I just don't agree with some very basic but important forum rules so I chose to leave.  I chose to debate some of the things people said simply because I think the important issues like freedom of speech/information are worth debating.  If someone does not have an issue with ITSAN's rules and whatnot, then of course they should stay and support them, especially if they are getting a huge benefit from staying.  If they donate, then they should continue to do so if they agree with what the funds are being used for.  Just because I don't agree with them, doesn't mean I think all people should stop agreeing with them - that would be socialistic and having a Nazi mentality.  Which I don't have - I want people to make their own decisions.  And I would never make anyone feel guilty for staying with ITSAN, supporting them, and donating to them as I believe they are helpful in many ways.  Some may think I am contradicting myself, but those smart enough will see that I am not. 

So off to do those things I do:  homeschool, cook, clean, study for another degree, write a book, get my garden going, research, and most importantly - spend time with my very dear husband and children!

Saturday, April 26, 2014

BIG things coming!

I am popping in to say I have not fallen off the face of the earth - although it feels that way!  :)  I have been lingering here and there and have been on/off FB to keeps tabs on how things are going.  I have been in the process of making some major decisions and changes in my life.  I have a LOT more to say but do not have time at the moment to explain everything.  Suffice to say all is good and I will be back soon to explain all that is going on and to respond to some negative criticism. 

As for my skin - all is good - so good in fact I totally forgot to take those pictures I said I was going to take.  My skin healed so nicely after the 2 day mini-flare that I am back to where I was before it happened and even better I think.  Not sure as I no longer look at my skin with any scrutiny.  I shower, I get dressed, I go about my day with no concern about my skin as it feels fine.  I have the dry spots like before but very little itching, no oozing, no pain, no redness, no swelling, and nothing that reminds me of my flare days.  My only issue at hand are my dry hands - they are dry but that's all, unless of course I start washing them frequently - then they crack and get super irritated.  Working one day a week is OK as the remainder of the week my hands recover back to their normal dry selves.  Working full time (in a hospital at least) will have to wait until my hands are no longer sensitive.  But that is all good as I have a lot of things on my plate at the moment.  :)

Hope everyone is having a good day! 

Wednesday, April 23, 2014

Side Effects from MTHFR supplements

It was brought to my attention by a few people that some people can experience side effects from taking too much 5-MTHF (active folic acid) - also known as over-methylation.  This is not common however it is still possible.  For most it means starting at a much lower dose.  The side effects apparently are more common among people with bipolar disorder.  I have yet to find out WHY the 5-MTHF can cause over-methylation - it is my experience that taking excess B vitamins (of which 5-MTHF is part of) is excreted from the body without harmful side effects.  According to Dr. Lynch however the over methylation can be due to other genetic mutations the person is unaware that they have.  One such TSW warrior had tested positive for the MTHFR gene mutation but his health care practitioner noted that other genetic mutations were more concerning and took priority. 

Where does that leave my research?  Well, basically it means I have a lot more research to do on other genetic disorders to see if they could possibly be related to TSW.  I personally do not plan to go out and determine if I have a bunch of other genetic mutations at this point.  I still believe that the MTHFR gene mutation is a big factor in TSW.  So far 2 people have tested negative according to my poll and 9 have tested positive.  Is it possible the 2 negative results were only tested for the 2 more common mutations and not for all potential 40-50 MTHFR genetic mutations?  Or is it that they are negative but maybe positive on another mutation like the TSW warrior mentioned above?  Or is there no correlation whatsoever?  While genetics is a very black and white science, it is also a very complex science. 

As for symptoms to watch out for in the event of over methylation - here is what Dr. Lynch has on his website (

Methylfolate Side Effects

Methylfolate is a remarkable nutrient yet it can create significant side effects.
Those who have MTHFR mutations (especially the C677T MTHFR mutation) learn that methylfolate is critical to take. The issue is methylfolate can cause more harm than good if not started at the right time or tapered up slowly in amount.
There appear to be three types of responses to methylfolate:
FIRST: A person who can jump on methylfolate and feel absolutely wonderful. The only down side they experience is why didn’t they know about methylfolate before?!
SECOND: A person starts methylfolate has an amazingly incredible week where they are happy, interacting and alert. Then the second week comes and they switch to wanting to hide in a room by themselves or literally throw dishes across the room out of anger. Or they may become bed ridden from muscle aches, intense headaches or joint pain.
THIRD: A person takes a small amount of methylfolate and feels all the methylfolate side effects right out the gate.

Methylfolate Side Effects:

  • irritability
  • insomnia
  • sore muscles
  • achy joints
  • acne
  • rash
  • severe anxiety
  • palpitations
  • nausea
  • headaches
  • migraines

Why does methylfolate create such an amazing week and then create such severe side effects so soon after?
It has to do with methylation, pre-existing inflammation and other genetic mutations which exist yet you’ve no idea they do.
This gets complicated quickly so I am going to keep it simple.
If you experience any of the above methylfolate side effects, I highly recommend you discuss it with your physician and get your dose of methylfolate reduced significantly or stopped for a week or two before reintroducing it.
UPDATE November 16, 2013
There are two three things you can do to quickly quench most of the methylfolate side effects:
  1. Consider 50 to 100 mg of time-released niacin. This is 1/4 of a tablet. Why? Niacin is broken down by SAMe. This means that excessive SAM is quenched by taking niacin. Niacin also helps break down glutamate and therefore increase GABA.
    • NOTE of CAUTION: You may experience flushing for 20 to 30 minutes. This is not harmful and is a result of histamine release. Since you are likely overmethylated, your histamine flush will likely be minimal – especially as this is time-released niacin.
  2. Consider 1 to 2 capsules of 250 mg of liposomal curcumin to help quench inflammation. If one takes methylfolate before inflammation is controlled, the methylfolate will worsen it.  One may consider taking 2 capsules of Optimal Turmeric three times a day during times of inflammation.
  3. Consider Hydroxocobalamin as it is an excellent sponge for reducing nitric oxide levels. Methylfolate increases nitric oxide levels – which is why it is so effective in reducing headaches, pain, cardiovascular disease risk, thrombosis, preeclampsia, periodontal disease, etc – but at the same time, excessive nitric oxide levels are harmful as they end up producing serious radical damage via nitrotyrosine. Hydroxocobalamin quenches nitric oxide quite effectively.

It is very important that any genetic treatment be done under a trained healthcare practitioner. 

Tuesday, April 22, 2014

Cleansing the soul and a larger than normal mini-flare...

First off - the last 2 days I have experienced a larger than normal mini-flare.  Can't call it a true flare in my opinion as there is no redness, swelling, or ooze.  I just had more than normal itching and irritation to more than one or two areas.  Plus my typical mini-flare lasts not even a few hours anymore - yet this has lasted 2 days and finally died down this morning.  I think it may have had to do with the extra stress I experienced the last few days.  I will post pictures later today or tomorrow.  I do not see this as a step backward as the skin is already starting to heal and it seems to be healing faster than normal.  So I will have to snap some pictures soon!  Areas affected:  neck, top of chest, fingers, forearms, wrists, and right ankle.  My hands were already irritated as I made the mistake of doing dishes 4-5 days ago as I was giving my kids a break from their chores.  My hands itched horribly within an hour of washing dishes and only calmed down last night.  I did quite a bit of damage to them with all the scratching but compared to how they have been in the past, they really don't look too bad. 

As for my previous controversial post - all I can say is I thought long and hard about the comments - especially those from Kristina - one of ITSAN's board members.  Again, I did not write this post in haste or as a knee-jerk reaction.  I am all too aware of how hard the volunteers have worked to get ITSAN going and spreading the word about TSW.  While I am grateful for their message, I cannot agree with some of their policies and their belief that only time heals.  This is a big thing for me as when I first joined the forums, I searched frantically for an answer to help speed up the process of TSW.  I used topical steroids for 30 years and I felt my "sentence" was too long and to be honest unnecessary.  I had suffered so much already - I couldn't imagine suffering on and off for 3-4 years.  I looked on everyone's blogs and was horrified by what I saw - the suffering was horrendous.  I felt completely hopeless that the only answer was time.  I was told time and time again that at least I have my answer and I just needed to be patient and eventually I would heal.  I even repeated that message many times to those new people who appeared so hopeless.  This did not sit well with my soul.  Any spiritual person will agree that this is not a good feeling to have.  While ITSAN opened up their forum to having an experimental treatment page, it still in my opinion did not change their stance.  Even before I found out about the MTHFR gene mutation, I was still perplexed on why they were not being more aggressive in finding an easier way through TSW.  Dan's moisturizer withdrawal "program" would have been a HUGE asset to ITSAN and the people dealing with TSW.  Yet instead of choosing to work with him and figure out a way past their differences in opinions, they just banned him.  I know there is more behind the story than that, but working together instead of against each other can only help.

So my decision to leave was not based on the donation thing alone - it was something I had thought of many times for many months.  And it was based on principals that I felt too strongly about.  I plan to branch out with others on creating another website and/or forum where ideas can be freely shared.  This is not something people will have to make a choice on - there is no choosing sides.  It will be open to everyone.  Again, ITSAN has a very important message that needs sharing - myself and quite a few others just believe that another message needs hearing as well.  This will only benefit those suffering with TSW - our main goal is to help alleviate that suffering as best as we can. 


Monday, April 21, 2014

A Sad Day!

Today is a sad day indeed - but before I explain why, I wish for everyone to know I am not bashing anyone here on my blog.  I am simply stating my thoughts and feelings about a situation that has occurred on the ITSAN forums over the last few days.  I am NOT encouraging anyone to remove themselves from ITSAN by any means.  Many people will wonder why I am no longer a member and this post is an explanation from my point of view. 

As of today I am no longer a member of the ITSAN forums - and I am deeply saddened by this.  It was MY decision to leave however I did so after I was given a final warning for undermining the ITSAN administrators.  I am perplexed why they thought I was undermining anyone when I was actually trying to help (this is my opinion).  A member had made a plea for donations explaining that donations were embarrassing and pitifully low.  I made a few comments explaining that some people may have financial hardships due to missing work from TSW.  I explained my own situation in which I have missed a total of 6 years of work due to my worsening eczema, depleted adrenals, and liver damage (from topical steroids).  I was trying to explain that some people may find the pleas insensitive given how much pain many people are in.  This statement was made: 

"We get a constant, steady stream of comments about how much a blessing this site is and how important ITSAN's work is, yet most of these commenters don't seem to want to pay anything for that benefit"

I find this hard to read given that it is not that people do not want to give - it is that they truly cannot!  I am one of those who cannot give at this time yet I had wanted to.  So I take offense to statements like this and others where people say people buy all sorts of remedies in hopes it will help them heal yet can't find $5 to give to ITSAN.  Do you ever think that maybe people are borrowing that money in hopes of finding ANYTHING to give them relief from such torment?  I also take offense to people calling me a taker...simply not true.  I have given lots of time supporting others emotionally and answering countless emails.  I have gone on a mission to directly help those affected by TSW to help ease their pain.  So I am not only hurt, but truly mystified by this situation. 

In any organization, growth can only happen if the leaders of the organization continuously assess the path they are on - that includes acknowledging mistakes and errors and correcting them.  I find it difficult to swallow that an organization that wants to grow will shut out any and all people who question them or give advice that may actually help the organization.   This is detrimental in my opinion and could be a big reason you will see such pitiful donations.  You may also consider that allowing members who did give money to call other people names is just not good for business.  Having a member say that most forum members are leaches and scum is truly disheartening as most members are just struggling to survive - to be called names is offensive and hurtful and not necessary. 

But instead of acknowledging any wrong on the admin's side or the one's donating - the posts are deleted and everyone pretends like all is good.  This is again detrimental in my opinion.  Kelly Palace had remarked on the plea for donations in a very kind and gentle way - a way that I found productive and would have probably brought in much more donations if she had created the post herself.  She has done so much for those suffering with TSW and I am deeply saddened to leave her and others.  But if they continue to allow administrators to make others feel guilty for not donating, and they allow admins to essentially bully those actually trying to help, then I can no longer support such an organization. 

I will instead continue to spread the word about TSW in the medical community and via Facebook and this blog.  I will continue to search for answers regarding the possible correlation between the MTHFR gene mutation and TSW.  I will continue to support my fellow warriors on their individual blogs. 

I have never come across a non-profit organization that tries to make people feel guilty for not giving them money.  My husband and I supported a non-profit organization plus a few ministries prior to me going through TSW.  We donated well over $200 per month just to the one organization.  My lost income has found us living paycheck to paycheck with my husband required to work overtime to make ends meet.  Our kids have dropped all activities and we no longer eat out.  We had planned to move to Kentucky to start a small farm - all of that is no longer an option until I am back to work on a regular basis.  I am not complaining - simply stating a reality - one in which many of those suffering find themselves.  It is what it is and we trudge through it.  Once I was in the clear and we were back on our feet, I had planned to donate that $200 to ITSAN every month because of how grateful I am for their work.  Yet I am left with a sour taste in my mouth for the way the organization is allowed to be run. 

If anyone reading this starts thinking maybe they too should leave ITSAN - I would say don't - you have a lot of support from the members there - if you are one giving a lot of emotional support - then others need you there.  I did not make this decision hastily.  I had left the forums a few times in the past for similar reasons.  This was basically the straw that broke the camel's back for me.   I had seen ITSAN make a lot of positive changes and had hoped something like this would not happen.  Those that know me well and work with me know that I am a reasonable, rational person.  I dislike arguments and do my utmost to be diplomatic and peaceful.  I am disturbed by all that has taken place but I urge those still supporting ITSAN to please continue to do so - they have a message that needs to get out there.  I just hope that changes can be made at some point that will help them grow bigger and better. 

Thursday, April 17, 2014

The MTHFR Gene

Everyone has it - it is a necessary gene.  The gene is responsible for creating instructions for making a specific enzyme that helps process amino acids.  It is responsible for helping convert folate to an active form that the body can use, and it is responsible for the process of methylation.  This is an over simplified explanation.  The actual processes involved are complex and can be further complicated if other gene mutations are present.  With the MTHFR gene, there are a potential of 40-50 mutations along the strand.  2 of those mutations are more common in the general population.  Those 2 mutations will require supplementation of active folic acid (L-5-MTHF) and active B12 (methylcobalamine).  Some will require an active B6 supplement as well. 

The end result of the methylation process is a substance called glutathione.  Glutathione is directly responsible for the cleansing and repairing of each cell in the body. 

Now there are varying degrees of severity when it comes to an MTHFR gene mutation.  You see we get 2 copies of the gene - one from each parent.  If both are mutated, your ability to convert active folate and B12 is reduced by 70-80%.  That means you are only making approximately 20-30% of the glutathione your body needs.  If you only have one copy of the gene mutated, then your ability to produce glutathione is only reduced by 30-40%. 

So why not just take in extra glutathione?  Well glutathione is poorly absorbed via the gut.  I personally had a few IV injections of it in the beginning after finding out I had the mutation.  But that is not a long standing option.  It is best to supplement with active B12 and active folate to allow your body to create the processes and pathways necessary to make its own glutathione.  Active B12 and active folate are available in sublingual form which are quickly absorbed into the bloodstream. 

But in order to prevent possible side effects or detoxifying reactions, it is best to get tested for the gene mutation prior to starting supplements.  There are rare cases where people can experience detoxifying reactions when taking active B12 if they have another gene mutation.  One can be extra sensitive to the supplements and require a multi step approach starting with very low doses.  It is complex and lengthy to discuss in detail here.  Suffice to say I have yet to read where anyone had an emergent situation arise from taking the supplements.  I personally think there is no harm in starting at a recommended dose prior to being tested...however if you feel worse after 4 or 5 days on the supplements, then stopping them would be advised.  I personally felt worse the first 3-4 days.  I think it was my body's reaction to a substance it so desperately needed that I had a slight detoxifying reaction. 

As for was recommended to me by a naturopathic doctor that my 8, 11, and 12 year olds could take the recommended adult dose of 800 mcg L-5-MTHF and 1000 mcg of methylcobalamine.  Seeking Health makes a sublingual tab that combines both of these in one tablet.  PLEASE NOTE:  Doses are in MICROGRAMS, not milligrams!!!! 

This information should be shared among the TSW community.  According to my poll, 1 person tested negative for the MTHFR gene mutation, but it must be noted that this person was only tested for the 2 most common mutations.  It is possible they had one of the other 40-50 mutations not commonly tested for.  8 are positive, and many more have been tested and waiting for results. 

The MTHFR gene mutation can cause a whole bunch of physical and mental problems.  If you or any of your family members have one of the following, it is worth it to be tested:

Autism, ADD, Schizophrenia, Blood clots, Pulmonary embolisms, Strokes, Heart problems, Down's Syndrome, Miscarriages, Infertility, Depression, Bipolar, Anxiety, Fibromyalgia, Chronic Fatigue, Sina Bifida, Neural Tube Defects, Migraines, Multiple Sclerosis, Dementia, Chemical sensitivities.

This list is not complete....there are many other health problems associated with the MTHFR gene mutations - however these are the more common ones. 

This information about MTHFR is also not complete - this is a very COMPLEX gene and has many different pathways and processes associated with it.  I could get into the nitty gritty scientific verbiage but I find that would be unnecessary at this point in time.  I personally think it is important to discover if you have one of the mutations and to seek treatment for it.  It will make the TSW much easier to live with!

What else can you do in the meantime if you decide not to take the supplements while waiting for test results?  The main thing is to decrease your toxic intake as much as possible!  I believe this is why diet and MW are such hot topics with TSW....both can reduce your toxic intake significantly, allowing your little bit of glutathione to work on the toxins already in your body.  Stop putting anything and everything on your skin and reduce baths to 1-2 per week (water can have various toxins - only adding to the toxic burden).  Decrease as many preservatives, colorings, dyes, and additives in your foods as much as possible.  Decrease exposure to toxins in your environment - open windows if you live in the country and invest in a good air cleaner if you live in a smoggy city. 

Again - not a comprehensive list of things one can do to decrease the toxin burden on the body, but you get the idea. 

I would appreciate any advice or comments - if you feel I left something out that is crucial and important, please let me know.  I did not intend for this to be a scientific post - I wanted to keep it as simple as possible.  In the future I will be detailing some of the important pathways to show just how complex this issue is.   For now, this may help others to understand why I feel the MTHFR gene mutation is the missing link to TSW - it would explain why some people get TSA and others can use steroid creams with no problems whatsoever.  It also explains why moisturizer withdrawal works so well for most who have tried it.  If it is not clear to you, please let me know so I can change this post around so that it is as clear as possible!  Thank you!

Wednesday, April 16, 2014

Another amazing story to share!

There is this 3 year old sweet boy who wants to be like other 3 years olds....laughing, playing, jumping, bugging his siblings, and so forth.  But God had other plans for him during his toddler years.  This little one suffered with eczema since the age of 6 weeks.  He also suffered with numerous food and other allergies (quite severe mind you).  Topical steroids were applied but the eczema only got worse over time.  This little one (AKA Bubba Fett) has an AMAZING mommy!  She went on long journeys, searching near and far to find a cure.  She couldn't stand watching her little one suffer so.  Finally in October 2013, she discovered ITSAN.  She finally realized what was happening...that the steroid creams themselves were making things worse!  She stopped the steroid cream applications and Bubba Fett went into topical steroid withdrawal.  Not only did he go through the ups and downs of this horrendous process, but his mommy had to deal with dismissive doctors who thought she was crazy to NOT put steroid creams all over her babe!  She describes the days on his blog:   He has had good days and of course some pretty darn bad days. 

But his mommy did not stop there....oh no she did not!!  She wanted to make sure to continue to help him...finding answers for his numerous allergies, finding ways to help him cope with TSW, and overall just improving his health.  What a GREAT mommy this little one has!!  She has looked into the GAPS diet and other things.  Then she happened across the information I have been sharing about the MTHFR gene mutation.  She decided to start him on the active B supplements.  She had also been doing MW with him as well.  And I thought I would share the pictures she shared with me showing the difference in his skin 1 week into the supplements:

His mommy wanted to know if it was possible that the active B's could work that fast?  The answer is yes!  I went from barely existing to going back to work and feeling great in 2 weeks.  So yes it can work that fast!  He will still flare until the TSW is out of his system.  But hopefully he will be like me...having mini-flares that only last a very short time, being able to sleep soundly, having less itching and burning.  I pray this little one jumps right back into toddler-hood....running, jumping, playing, and of course bugging his siblings like all 3 year olds should!  

Many thanks to his mommy for allowing me to share his story and his pictures with my readers!  As for whether or not he has the gene mutation....testing has not yet been completed.  However given his many allergies from birth and his almost immediate response to the active B's, one can guess that he more than likely has the mutation.  His mom will keep me posted! 

As for all the other mommy's out there with little ones suffering with TSW - you are my heroes!!  I have 3 kids now ages 12, 11, and 8.  I cannot imagine watching any of them at ANY age go through such pain and suffering!  Your strength is like that of steel!  You stay up at all hours of the night with your little one, trying to ease the suffering.  You take care of the other members of your household, trying desperately to hold it together!  You have private moments of breaking down, but then pull yourself together to keep fighting the good fight!  I want you all to know you are warriors as well!  And all of you are in my thoughts and prayers as well as the ones suffering! 

Monday, April 14, 2014

15 MONTHS off topical steroids!!

Today marks 15 whole months off topical steroids!!  I never thought I would make it this far.  The first few months were so horrendous....each day agonizing pain stopped me in my tracks.  I remember thinking there was no way I would make it 6 months or a year or even 15 months.  It felt like time no longer existed.  I felt like TSW put me in a black hole where everything stopped and ceased to exist including myself.  Sounds pretty dark and depressing, right?  Well welcome to TSW!!!

But the end of the tunnel for me is near....the light is shining brightly!  I still have a little ways to go with my skin....dry skin patches here and there and the occasional mini-flare that affects maybe 0.5% of my body.  I haven't smelled the sick metallic odor of ooze in a long time.  I change my clothes and sheets like a normal person.  I vacuum once or twice a week like I normally did.  I am almost back to normal with my energy levels (although with life long eczema and other health problems, I really don't know what normal is).

The bottom line is 15 months in, I never expected to feel almost normal! I remember reading other people reporting being at 15 months and still suffering pretty bad.  I remember being scared that I would suffer for a pretty long time given my usage history.  People would  say that it wasn't too bad because the skin would flare for awhile, and then you would get a break.  Unfortunately my first 8 months saw no break.  I envied those that would catch a few weeks break and enjoy life until the next flare.  I figured I would just flare continuously until my skin decided to heal.   I had read of some people at 18 months who had had no break.  It scared me to no end to be like that,

So to be 15 months in and 90-95% healed feels AMAZING!!   I have not had a big flare since starting the gene therapy 6 months ago! I feel God has blessed me in so many ways!  I want to use that blessing to help others recover from topical steroid damage in a much shorter time with less intense symptoms.  I want to thank everyone who has gone to get tested for the MTHFR gene mutation and reported back to me!  Together we may change the course of TSW!  I truly feel great things are around the corner!

Friday, April 11, 2014

Healing Pictures

I was able to find my camera and took a quick few shots before heading out the door for our daughter's birthday celebration.   I have some before and after shots of my hands and left ankle.  Lots of healing taking place.  The before pictures were taken just over 2 weeks ago.  My hands are still very dry but doing so much better without putting anything on them.

Thursday, April 10, 2014

UPDATE on skin and life!

A lot has been going on around here.  For anyone not familiar with my blog or has not kept up - here is a brief rundown on life for me:  My husband and I purchased 68-70 acres 3 years ago in Kentucky.   Our dream is to basically live off the land as much as possible.   For the last 5-6 years I have studied alternative medicine and nutrition due to my ever worsening "eczema" and health problems.  We have drastically changed our diet and have slowly become more healthy.  My kids used to get the average 2-3 colds/illnesses per year when they were younger, but now are rarely ever sick.  If they get a cold once a year, even that is a lot for them!  But anyway, my husband and I are both nurses....working as traveling nurses around the country the last 7.5 years.  We had planned to move to our property last year and start building a house and starting our small farm.  But alas, TSW had other plans for us.  So now with me back to work, we thought we could try going out there this spring.  We went there last week for interviews and to look for a place to rent or buy  near our property so we can get started.

The trip was a success in that we were offered jobs in a few places.  Unfortunately with  being off of work all last year, financially it may not yet be possible to move.   We are still discussing this and will decide soon, but it is possible we will continue to work here in NY for another 6 months or longer.  I would be upset if we don't make the move, but moving with less money would create its own stress.  So we will see....

As for my skin...doing GREAT!  I had a mini-flare on my neck and forearms while in Kentucky.  I am sure stress played a role!!  But it has started healing nicely already.  My hands continue to do really well! I tried to find my camera this morning to take pictures, but my camera for the moment is lost.  I have a lot of cleaning to do and re-organizing so I am sure I will find it soon!  Still itching more than usual at night, but sleeping decently with only 1.5 tabs of benadryl and nothing else.  My ankles  look wonderful!  They have been healing a lot recently.  My mini-flare on my belly button from over a  week ago has not healed well....I think it has something to do with wearing jeans and sitting down driving for such long stretches!  Hopefully it will heal this week.

As for how well things really is a clue:  Hubby had to work Friday last week.  I left Friday morning for Kentucky and he was going to drive in on Saturday.  I took all 3 kids and 2 dogs.  I packed the truck myself with everything we were going to need for everyone.  It did NOT overwhelm me at all.  I was fully packed and ready to go Thursday afternoon.  I had cleaned out the fridge and made sure I had all contact information for our interviews.  I woke up at 6 am Friday and on the road by 6:30.  Our 2 dogs are long-haired German Shepherds.  One is 3 years old and acts like a teenager still.  And the other is a 4 month old puppy.    The first 15 minutes of the trip I spent yelling at the 3 yr old dog.  He whined like crazy!!  My husband has spoiled him rotten by always keeping his window down so he can stick his head out - even in the dead of winter....freezing the kids out!  It was 38 degrees out and there was no way I was rolling down any windows!  So he sat there whining like crazy!  I threatened to leave him on the side of the road, but he wasn't hearing me (haha!).  I then pulled over and decided he needed some training.  We use a prong collar for him for control at times.  He has super long hair and while the prong collar is meant to pinch the skin, it actually pinches his hair which he hates. So it is very effective without being cruel.  So I attached a leash to his prong collar and VOILA!  No more whining with only 2 small tugs on the leash!  It was a beautiful ride the rest of the way!!  He got greatly rewarded for this wonderful behavior and was a whole different dog in the car!  I think twice he nudged my arm to say "Hey it's been awhile since you last opened the window for me"...but other than that it was great!

So why am I telling you that story???  Because if you have TSW and are in the throws of despair from being in a bad flare, you can imagine that a trip like this would be entirely IMPOSSIBLE!!  There is no way I would have managed a 12  hour drive with 3 kids and 2 dogs by myself. Let alone unpacking at midnight and making sure everyone was fed and had  potty breaks, and dealing with whining from a dog no less!  I am telling you this so that you can visualize that life WILL go on and you WILL get better!!   That the little things that bother you today  will not bother you in the near future!  That you will focus on so many more things than your skin one day!  I will be 14 months into TSW soon....and doing amazing considering my usage history and significant physical problems I had (like liver problems and adrenal fatigue).

Hoping you are all doing well today!  If  not, please know you  will feel normal someday- hopefully someday really soon!

Wednesday, April 9, 2014

On an MTHFR gene Mission!

Well I am back home after a week long trip to Kentucky.  It was a wonderful time and full of things to ponder.  More on that later as not all decisions have been made yet.

My current mission other than getting back on the healthy eating bandwagon, getting my house in tip top shape, and getting my kids back involved in activities, is to do some deep research into the MTHFR genetic mutation issue!  So much has been said this last week on Facebook regarding this.  I knew eventually when more and more  people got tested and turned up positive, AND started seeing results with proper therapy, this whole issue would start exploding.  The explosion is starting.  While this is a wonderful thing, it has also made me aware of how little I know about the gene mutation.  I did a ton of reading on it when first diagnosed, but obviously not enough!! So I plan to make it my mission the next few weeks to become MUCH better informed on this very complex issue to make sure I am providing all the right information.  I just feel like there are some things I just still do not know about it and the supplements.  So I want to be able to give the best possible information to everyone!  

Stay tuned.....

Wednesday, April 2, 2014

Taking an online break...

Things here at home are pretty crazy busy...will catch everyone up on the details at some point....but just wanted to say I will be away from the online world for awhile.  Nothing bad...all good really!  But there are times when things are SO busy that I have to cut some things out of life for a bit.  The next few weeks are going to be one of those times!  I hope everyone is well and hanging in there!  I will check back sometime in the next few weeks.  At this moment I remain flare free and my skin is healing nicely on my neck and hands.  I pray it continues down this nice road it's on! :)

Tuesday, April 1, 2014

2 day mini-flare

Well the mini-flare struck again...coming and going over a 2 day period of time.  It consisted of itching for 10-15 minute stretches about every 6-8 hours and rotating between the  right side of my neck and the back of neck and 2 areas on my left forearm.  No oozing, redness, swelling, or pain. Just itching and re-opening of sores and creating scratch marks.  Two mornings in a row I woke up at 6 am to the intense itching but was able to get back to sleep within 30 minutes.   It seemed to last longer than recent mini-flares in the past few months but was no way a nuisance.  It was a minor blip is all and I think I know why it stayed for 2 seemed to correlate with some really intense pelvic pain I had the other night that lasted for a few hours... a pain I know well which is associated with ovarian cysts.  I haven't had one in over 2 years, but knew exactly what it was!

Today...all seems well again.  No itching....just waiting now for the damage to heal.  I am very thankful it did not affect my hands or hands are looking so good now!!!  I will try to take pictures tonight or is pretty busy right now with all the packing! But wanted to keep my readers up to date even on the little things.  :)