Friday, December 20, 2013

ND visit....very important post!!!

OK....came early from work....darn hands were a MESS and there was no way I could work as they just got worse by the hour keeping them bandaged.  I can't keep them open to air because of risk of infection but having an occlusive dressing on made them so much worse.  Not sure what that means for working next week and so forth but I will worry about it later.

I went to the ND today and was told I have the homozygous type C MTHFR gene mutation.  Basically it means my cells can only repair and cleanse at 10-20% of what normal cells do.  That's bad.   It can cause high homocysteine levels in the blood causing inflammation, heart disease and a ton of other disorders.  I wrote a post about this here.  Also there is a great blog post by a doctor Jill who explains it way better than I could....

Basically it partly confirms my theory that those of us with TSA/W are part of the 30-40% of the population that has some factor of this MTHFR gene mutation.  It would explain why many people do not become addicted to steroid creams at all after years of use (like a cousin of mine),  It could also explain the varying ranges of withdrawal symptoms.  If I'm right, then people who have severe problems like chronic fatigue, arthritis, and other auto-immune problems and take many years to heal from TSW probably have the worst case scenario for this gene mutation which is homozygous types A and C.  And those who seem to have a light case of TSW and heal quickly might just have the heterozygous form of either A or C, but not both. Having the heterozygous form of just one means your cells repair at a rate of 60% compared to normal people's cells.

So why does this only  partly confirm my theory?  Well we need more people with TSW to be tested.  If 100% of people with TSW test positive then we will know the course of treatment can significantly reduce symptoms and possibly length of suffering.  With the test results, my ND changed some things.  He added a few new things and increased my 5-mthf to 5 mg up from 1 mg.  He said while the MSM and glutathione are helpful and needed, the 5-mthf is what I really needed to increase.  So he said I can continue with the oral glutathione and stop the IV form as it was not necessary to take the higher IV dose.

If you are interested, just ask your doctor or ND to be tested for the MTHFR gene mutation.  It only took a few weeks for my results to come back.  I am going to look into trying to get funding together so we can get a bunch of us tested.  But if you do get tested, please let me know!  I think it would be a very important study to do.  And if we have a number of people who got tested and all tested positive, it would give us leverage to get a study going.

That's it for now.  I was doing really good this morning but now my hands are a wreck again and typing is making some ooze come out.  Hoping it was just the dressings....praying it is gone by tomorrow and I see some healing in them soon!


  1. Tracy, you know what to do with the lemons. That was a strange response from Jill to your questions. Whether it's bad news or not is debatable. If you didn't know would you still feel the way you feel right now? And, now that you do know, you are better equipped to take care of your health right? So, maybe it's a good thing after all. Sorry if that sounds paradoxical. Life is full of paradoxes. I may get tested. Have to think about it and do more research first. Will let you know the results if I do.

    1. Hi Dan....I was not impressed with her response but like my own ND she may never have heard of TSW. As for the "bad news"....I never thought that the news was bad....just the specific type of mutation because it means my cells only function at 10-20% at the repair level. I think the test results were good because it gives me something specific that I can work on to fix and help my TSW along. I also think it can help prove why MW works. By not adding any more chemicals to your cells, you have less to process and clean out.

    2. Hi Tracy, I didn't even think about the fact that she probably wouldn't be aware of what tsa/tsw is, good point. Have you tried Dead Sea salt baths for your open wounds? It works great for me. And, any remaining open wounds after doing these baths I would treat with water diluted tea tree oil. You should be able to completely heal those open wounds with this method within just a few days. Some people use Epsom salts, but I chose to use the Dead Sea salts for their high mineral content.

    3. Hi Dan,
      Yes....I have a ton of Dead Sea salt. I stopped the baths when my skin got better a few months ago. I took one the other day with this flare and my skin was on fire! I will say thought that afterwards I felt much better. I flared again last night and while my skin is calmed this morning I am afraid of getting in the tub for fear it will burn - but I know it's good for me. So I am giving myself another 15 minutes here on the computer and slowly sipping my coffee before jumping in. I bought new tea tree oil - the pure kind. The spray I bought had a few other things mixed in with it and it made my hands feel like pre-MW skin. So I will try your method here and see how it goes. I have to work Monday and am afraid of having to call in again. Not what I want to do. Hope you are having a good day!

    4. Hi Tracy, oddly enough the baths only bother me for the first several minutes and then my skin starts feeling way better by the end of the 20 minutes. I do start itching after I dry out from the bath, but it's a trade off for healing those open skin breaks. After I get them closed I back off from the baths and just allow the skin to do it's thing until I feel I need to bathe again.

      The pure tea tree oil works really well for healing up those persistent skin splits that don't quite heal from the baths. I just dip a Q-tip in the bottle and then pour water over the Q-tip for a few seconds to dilute it, and then aplly to skin splits or breaks. If I have large areas of skin breaks and/or oozing, I would do a bath without the dss but add several drops of tea tree oil to the bath. Hope that helps! I think you can get your skin in order by Monday.

    5. I forgot, very important to not scratch during the dss baths. I did once and it really tore my skin up and made it much worse. After drying out and you get itchy, just lightly rub your skin in lieu of scratching it if possible. Soon, by being off moisturizers you will find your skin will be much stronger and be better able to handle the scratching. I know you probably know some of this stuff but wanted to say just in case. I hope you have a good day!

    6. I noticed a long time ago that scratching during a bath was a bad thing to do. ;). I feel loads better after my bath. I am itchy but nothing I can't control. Just got to get the courage up for the tea tree oil. I know it can burn so I will test it on a less raw area. Thanks so much for the help and support!! BTW did you know there is one other TSW warrior who tested positive for the gene mutation? I think if even 5-10 more people get tested and they all come back positive we may have.what's necessary to get a larger formal study done. Keep me posted if you decide to get tested. I may personally front the cost for 5-10 people to be tested if my hubby agrees.

    7. I think I'll probably do the test after next week. Will let you know when I get the results. Frankly, I am broke from this crap but will not accept any money from anyone unless they are so wealthy they don't need to work. So, please don't send me money, I'll send it right back if you do. This is an interesting subject for sure. I just wonder sometimes if I really want to know things like this for fear of finding out bad news, and then belief can potentially manifest itself physically, possibly before it would have happened if I hadn't known about it. This goes for all tests. Sometimes I think ignorance is truly bliss. I just have a difficult time with the whole idea of all testing and finding out I am at risk for this or that. I just went through a bladder cancer scare from my doctor due to a common pee test. I've been through so many scares from misdiagnoses, mistakes, errors, etc. in my life that I am very on the fence about these things. I understand that having the information can be very beneficial so it's kind of a catch 22 situation for me. But for this test, I can handle it so will do it. It can help a lot just knowing either way.

      The tea tree oil always stings at first but I have found the sting goes away within a half hour or so, and then my wounds feel good, and often will heal this way within two days. You can adjust how much water you pour over the Q-tip according to how diluted you want it. I dilute it a lot for larger areas and less for smaller areas. No dilution at all for tiny spot treatments. I used it straight on those little blisters when I had them, and other tiny spots of broken skin. It worked really well.

    8. I get what you mean about tests...diabetes is prevalent in my family and only once every 3-4 years do I get a Hb1Ac done to see if I am headed in the diabetic arena. I had gestational diabetes with my first 2 kids but not my third. Was told I would develop diabetes in 10 years - that was 12 years ago and so far so good because I maintain a relatively decent diet. But people would be freaked out to know I don't go for annuals to my OB/GYN doc - last one was 8 years ago when I had my third child. And I'm a nurse! But I do not agree wholly with modern medicine - only certain things about it are good. Other things are really bad. I take it all with a grain of salt and make my own decisions. I only get the necessary vaccines for my kids....the BARE minimum - tetanus, and well tetanus. That's it. My dog ONLY gets the rabies vaccine because it is required by law. I think too much chemicals in our foods and all the damn vaccines given to kids makes them very sick in general. My kids barely get a cold every few years, And when they do it lasts all of 2-3 days. I think there is a lot to be said for eating right and natural immunity.

      Anyway I tried the tea tree oil and it didn't burn too bad at all. I have done it twice today and already seeing a big improvement! Thanks so much!

      As for the MTHFR test - it can be beneficial to know given high homocysteine levels are associated with heart disease and strokes because of inflammation. One of our fellow warriors suffered a TIA (mini-stroke) a month or so ago at a young age. I typically don't buy into testing for every little thing....but if this could help others suffer 1/2 the time even from what MW does, then we could help a lot of people in the future. Imagine if MW and supplementing for a gene mutation could cut people's suffering from 2 years to 6-9 months...these are just educated guesses of course. But even if the gene mutation theory does not pan out...I am already a believer in the MW....makes it so much more bearable!

    9. I have a question you may have an answer to or know something about. I've mentioned this to a few doctors and they just look at me like I'm crazy and don't ever answer the question. About 3 1/2 years ago I had a minor neck surgery and the outside wound, which was about 3-4" long, healed very quickly with no redness or inflammation. By the end of 4 weeks it was completely healed. No pain, redness, inflammation, nothing. About this time I needed a blood sugar test according to my ophthalmologist, but my GP refused to give me one without doing a complete physical exam first. During the exam he talked me into taking a tetanus vaccination in one arm and a Pneumococcal Vaccine called Pneumovax in the other. The one that protects adults against 23 strains of Streptococcus pneumonia bacteria, called pneumococcal polysaccharide vaccine (PPSV23). I think it was this one, if not it was the other one. There are two types of these.

      A few hours later inflammation broke out on the old surgical scar on the back of my neck and the area swelled up the size of a baseball. I finally got in to see a doc (same office, different doc) that evening and was told not to worry about it. Over the course of the next couple of weeks it got worse and worse so I changed clinics and got a new doc. He put me on those oral steroid pills that you take 6 the first day, 5 the next, and so on. Over the course of a few months he tried two of those dose packs (I think they are called Z-pacs?) and they didn't work. The inflammation just stayed and by this time it was covering a larger area than at first. It would be mild in the daytime and increase in severity at night. Finally, my GP had me do a one weeks course of prednisone and it knocked it out completely. part 1

    10. Fast forward to 2-1/2 years later and I had a fine needle aspiration biopsy on a small tumor in the side of my neck. It got inflammation and the inflammation would do the same thing. Be fine in the mornings when I get up but increase throughout the day into the evening. One evening, the inflammation "traveled" to my old neck surgery area and was acting up there and then went back to the side of the neck. It was very odd and it felt like the very same inflammation, only with a memory. After about 3 weeks I literally had to tell one of the top neck surgeons on the west coast of the U.S. that my swelling was inflammation similar to the kind I had from my neck surgery. He had told me it was just the tumor (benign) acting up and needed to come out. I went home and took a weeks course of my old prednisone and it knocked the inflammation completely out. The tumor shrunk back down to it's original large pea size. That was about a year ago since and every doctor I talk to about my suspicion of the vaccination affecting my immune system in a negative way causing it to attack surgical areas they look at me like I'm nuts.

      I suspect that I was given the vaccine too soon after the neck operation because the surgical wound on the inside of my neck wasn't 100% healed like the outside wound was. Therefore, it caused my immune response to go nuts in that spot. I have never had inflammation like this in my life from any wounds, surgical or otherwise. I think the vaccine screwed up my immune system, and my GP says no, my tests show my immune system is strong. I had complained to him that ever since I got it that I have had a constant runny nose and seem to be constantly blowing my nose like I have a mild cold for years! I just told him I felt healthier before that vaccine then I have since. And he just blew it off. he said I was sick so often because my immune system was working well. This guy is well trained in immunity type things too even though he is a GP

      Do you ever heard any similar responses from this vaccine from what you've seen or heard from at your work? I am fine now but am very concerned about the next time I have any surgeries. I don't ever want to have to take prednisone again after clearing tsw. Oddly enough, my immune response to tsw hasn't had that same kind of inflammation. It has been a completely different kind of inflammation and much less severe. I am soo sorry I allowed that doc to talk me into those vaccinations I can't express it enough. I was very weak at the time from suffering for 2 months with pain in my arm from a pinched nerve, and then the surgery recovery period which also included lots of pain left over that gradually went away. Just thought I would ask just in case. Sorry this is so long. part 2 (end)

    11. Hi Dan,

      I am against most vaccines - for the simple fact they suppress the immune system for a period of time after receiving them. Ever hear of people complaining they get the flu after the flu shot? It's not possible to get the flu. The problem is the body goes into hyper drive immune wise after getting a vaccine, leaving your defenses down. A typical cold virus you would normally fight off in a matter of hours takes hold and multiplies at an exceptionally high rate because your immune system cannot fight back during the 2-3 days post vaccine period. You then have a really nasty cold that mimics the flu when ordinarily your body would have fought it off with no problem. In your case, your neck wound probably had a few left over bacteria or virus hanging out - nothing concerning whatsoever....but then the vaccine you took totally compromised your ability to fight those last lingering germs. The body then responds with a hyper inflammatory response.because it is in hyper drive. Not that it means you had an infection at the surgical site....but your body sees the surgical site as a weak point and will send all left over defenses to that area...thus creating inflammation.

      Just an FYI...your gut holds over 50% of your immune system in the small intestines. Taking a good pro-biotic and cutting back on processed foods would be a huge help if you don't already. I personally believe 1 or 2 vaccines are OK and necessary but a vaccine meant to fight off 23 different strains is a strong vaccine. You over work your immune system - you are going to severely strain it....kind of like a pulled or torn muscle. You overdo it all at once, your muscle can take months to heal if torn. Your immune system is fighting every day to protect you. Give it too much at once you can weaken it for months or even years in my opinion.

      Hope all that made sense!

    12. Thanks Tracy! Best explanation I've heard to date. I think this vaccine has effected me for years. On the bright side, maybe it will save me one day from a serious illness. However, I'll never get another again, and if I hadn't been so weak at the time, I would never had said yes to them in the first place. I know my doctor meant well but he should have known to wait at least 3 months after a surgery to give any vaccines, especially powerful ones like these are. At least that's my understanding. Thanks again.