My BIG Doctor Appointment!

I just got off the phone with my new doctor - he is 4 hours away and I made the trip last month for my first visit.  He spent over 2.5 hours with me on that visit.  I had comprehensive lab tests done which were to the tune of $550, but they were the high priority tests.  He said testing my adrenals were not important given I am over 3 years steroid free.  He said if I still have fatigue later on after addressing all my other issues, then he'd recommend adrenal testing.  This visit was by phone and lasted just shy of 2 hours.  He went in depth on all my results and how to address them.  My biggest issues right now are severe allergies and low glutathione levels due to my methylation cycle being off balance (from multiple mutations).

First, my IgE total level was greater than 2000 - he said this was one of the highest levels he has come across.  And most of it was probably NOT due to food allergies as my food allergies registered low.  So he asked about mold since I have some severe allergies to mold.  Well, the house we are in now has very little mold, but the last house we lived in for 3 years was very toxic with mold and that is when I started seeing my food allergies and asthma rear their ugly heads.  So now he is going to send me for some blood work that will see if I have mold in my body.  He said if that is positive, then most of my problems may be from the mold and we can address that and hopefully lower the histamine levels in my body.

Next, my low glutathione levels are causing me to not heal properly and might be contributing to the asthma and eczema.  But he actually doesn't recommend supplementing with glutathione initially.  He said I need to take other things to help boost my own glutathione production instead and if that doesn't work, then we can consider glutathione supplements or injections.

The end result is I need quite a few supplements - all of which are pretty crucial to my multiple mutations and deficiencies.  He also said I should maintain my paleo eating as my body metabolizes best with proteins.  So, I know at least I've been doing something right these last few years maintaining a low carb diet.  He also said leaky gut does not seem to be a big issue for me - so maybe all my leaky gut things I've been doing have helped, but my mutations and deficiencies have just stood in the way of healing (on top of a potential mold issue).

There were many minor issues we discussed, but for the most part, I feel like he has a really good handle on what is happening in my body.  I am excited to get my report from him this evening and to start the supplements he recommends.  He is going to have me start what is called B minus - which is all the B vitamins minus B12 and folate.  He said after a few weeks on that, then I should start B12 (active form) and a few weeks later active folate.  So, he's not just starting me on a bunch of stuff and leaving it at that.  He seems to take a very careful and thought out approach based on what he is seeing on my lab results and also what my symptoms are.  Even though his fees are a bit pricey, I can now see that his fees are worth every cent.  Obviously time will tell more, but just his careful approach and well thought out plan is making me feel confident that my asthma, eczema, and other issues like fatigue will clear up soon.

And now I am going to paste my results here from the blood work I had.  This will show you all exactly what was tested and what $550 got me.

Please leave me a message if you have any questions.

Monday is the BIG day!

In 2 days I have my follow up appointment with my new doctor. My last test results came in over a week ago and it is time to hear what his plan for me is.  My results were posted on the patient portal and let's just say I have MAJOR deficiencies. Lots of vitamin deficiencies along with some proteins and glutathione. Here's the thing that gets me though.  During my first appointment he asked me if I had received vitamin C injections along with the glutathione injections. I was like NO.  He asked if my ND had recommended high doses of oral vitamin C and again my answer was no.  So he proceeded to tell me that glutathione needs vitamin C in order to work well in the body.  Hmmmmm.....could be why there were times when the glutathione didn't seem to be working. So along with a severe lack of glutathione, my body is also deficient in vitamin C....like in the red zone. So while waiting for my appointment I decided to start liposomal vitamin C and glutathione orally.  It has only been 5 days but for the last 4 days straight, I have been extremely tired....taking 3 to 4 hour long naps!  Talk about healing!  I've also seen  my skin on my arms go from dry and slightly itchy to super soft and almost all dry spots are gone. I also had a small patch of eczema on my right ear and that is all gone.

So to say I'm excited about Monday is an understatement. Here I've only tried a few things on my own based on my lab results and already seeing big changes.  Right now I'm typing from my phone. Next week when I get onto my home computer I will copy and paste my results here so you can see how in depth the testing was. And I will also post how my appointment goes.  I've been working full time hours and even some over time the last month.  And yet I've managed to keep up with things at home, take my kids blackberry picking, and go for bike rides. Still cooking a lot and making my own bone broth.  Basically I'm moving full steam ahead!

Nothing but good news....

The last few days have been very busy as I had to work a few 12 hour shifts and we were pretty busy.  I was pretty tired at work and figured with taking my new supplements that maybe I was entering a healing stage.  All I know is something is working!  I typically am very tired after working 2 long shifts in a row.  But I got up early and have been on the go all day getting errands done and even mowing the lawn. It's not even dinner time and I feel like I could go exercise, make dinner and get a few more things done!  I feel like someone gave me an injection of pure energy!  And my mind is extremely clear not slightly foggy like normal.  I was able to multi task today when paying the bills...I was able to get insurance forms filled out and send multiple emails without having to stop and think.  That may seem minor to some people but I think many of you can relate. We've lived with brain fog for so long we forget what its like to think clearly and to do so for an entire day.  To top it off, I accidentally ate chocolate yesterday at work.  Was in a rush and grabbed something without realizing it had chocolate on it.  I was waiting for the hives....those pesky itchy bastards.  But lo and behold,  no hives!  And to add to all the good news, asthma is almost negligent, and I've noticed barely any itching at all even though I've snuck in dairy and gluten here and there.

Not sure exactly what's working but it's obviously more than just my diet changes as I changed my diet about 5 weeks ago and while I saw progress, I came to a standstill.  So I have to think it's the few supplements I started taking. But time will tell more.  Until next week or thereabouts, happy healing, and have a GREAT 4th of JULY to my American readers!

Ohhh, one more thing....I have been sweating for over a year now with no skin irritation, but today while mowing, the sweat was really pouring off of me....gross, but so wonderful.  My face was slightly red when I went in to take a shower but my neck which would have been red about 1 to 2 years ago was clear and not a hint of redness!  So awesome to see my body work normally!

11 vials of blood later....

Yesterday was my new doctor visit.  It was a 4 hour drive in thunderstorms and made for a long day.  BUT, all I can say is WOW!  He spent 2 hours talking and reviewing so much information. He had read my 4 page history prior to the visit so most of that discussion was just clarifying things and adding in anything I forgot. He explained everything to me clearly.  I had a lot of blood drawn for food allergy testing, methylation testing, and vitamin/nutritional testing. He was extremely thorough and said there was not much to recommend at this point until we had all the test results.  He said he was able to guess what I needed and why I had problems taking my active B's.  But he said that he needed more information from the blood tests to determine how to proceed and to be more positive on which gene mutations were expressing themselves.  He said I should stay on the leaky gut diet and those supplements related to my gut.

The thing I liked most about this doctor besides being extremely thorough was that he offered no promises nor did he say with 100% certainty he could cure me.  He did offer reassurance that I was right in that there was something else besides MTHFR I needed to address.  He also was not focused on just one thing (gene mutations).  Instead he focused on multiple areas of concern like nutrition and allergies. He also talked to me at my level knowing I'm a nurse.  That alone was a breath of fresh air.  He explained things at a higher level and did not oversimplify  anything.  It made the whole appointment more comfortable and basically easier to get through for both of us.

One thing he said he may end up recommending is a week long course of IV vitamin C, glutathione and choline.  He said because my hubby and I were both nurses he said he would feel comfortable allowing us to do these infusions at home. That would save significant money and drive time!

So overall I am VERY pleased with the appointment and this doctor. He said we will do phone consults from here on out.  My results will be in on some things in 7 to 10 days and 3 weeks for the nutritional panel.  I will of course keep all of my readers updated on the results!  For the next few weeks I have decided to add a few supplements in to see if they will help or not.  I am doing this on my own accord and not on the doctor's  advice.  I'm only doing this because I had already ordered them based on what I thought I needed.  Some of the things the doctor said in our visit confirmed that I probably need these supplements.  I really need to start working full time so I'm doing this so I can measure my reactions while still  only working part time.

Until next time.....happy healing to all!

MAJOR UPDATE!

No, I'm not flaring, BUT I have stagnated again with my asthma and hives and dry eczema.  I have been doing very well on my diet, yet I continue to need 1 neb treatment a day for my asthma.  That may not seem like a lot compared to 5 or 6 per day, but I shouldn't be needing any!  Then my weight loss stagnated.  Holding at about 205-206, and it's only been a few weeks since starting to eat better. But then the hives sneak in about once every other day....very small and nothing that causes mad crazy itching, but enough for me to notice and get aggravated.  The patchy eczema on my arms is still almost gone, but a few patches just keep hanging out.  I can't really explain it, but I just feel like I'm not getting ahead here in the healing department.  I have been off all supplements except for those for my leaky gut (l-glutamine and extra gelatin).  I even stopped my active B's because every time I took them I felt off for a few days and having symptoms of over methylation.  Overall I just have been feeling like I'm missing something.

Well, one day last week I came across a post on one of my other FB groups regarding nutrition. Someone posted a link where you can upload you 23&me DNA data and they will tell you which gene mutations you have related to nutrition (like MTHFR).  I think the cost was somewhere in the $40 range for this report.  I got the report and I have 18 homozygous mutations that can be "fixed" with nutrition and/or supplements.  I then proceeded to buy the necessary supplements.  However I did not want to start taking all 15+ supplements at once - if I had a reaction, how would I know what I was reacting to?  So today I proceeded to research each gene mutation and try to decide which one I was going to address first.  Well I have the CBS mutation which basically is worse than MTHFR and can be made worse with MTHFR treatment like methyl donors (like my MSM powder).  It started all coming together as I was reading this....why my skin was getting better but my other issues were getting worse.  I almost cried (but didn't).  I was a bit overwhelmed by how much I did NOT know yet I felt so thankful for coming across this information.  The CBS mutation is actually still being studied as it presents differently from one person to another.  Treatment will be based on blood work results and individual reactions to specific treatments.  Essentially, I would not even attempt to treat this on my own!  I immediately looked up providers familiar with these genetic mutations and how to treat them.  I found one 4 hours away who will do phone consults after an initial in person visit.  He had an opening this coming Monday.  So I have not taken any new supplements.  I will be going to see him and then get his opinion on how to treat all these mutations.  I of course will keep you all informed as to how this progresses.  I have a very good feeling that I will finally be able to heal completely and live a more "normal" life that does not include a strict dietary regimen.  Mind you, my life is comparatively normal when I think back to my TSW days.  Yet, the ongoing hives and asthma were just enough to aggravate me on a daily basis.  I don't have that intense, I'm going to scratch my heart out itch.  But I still itch somewhat on a daily basis....nothing that drives me mad or puts me over the edge.  But enough where I say to myself, "When am I going to finally stop itching for good?"

So keep the chins up and the eyes on the light at the end of the tunnel!  More to come soon!

www.nutrahacker.com  (site to link 23&me data for mutations)

Physician Directory  (find a doctor who can treat you for genetic mutations - this is world wide)

So much better!!!!

Well it is day 4 of my very limited diet.  All I can say is I'm doing way better!!  No hives and only 2 neb treatments for my asthma in the last 36 hours.  That's truly amazing given I was on average doing 3 to 4 per day.  I was a bit concerned about the bone broth due to my histamine intolerance but so far no hives.  I did have to use my neb yesterday because I ate bacon bits in my salad.  I thought for sure my reaction the other day was due to the eggs, not the bacon. But I had bacon yesterday and got itchy and needed a breathing treatment.  This morning I just had eggs and no reaction.  It really helps to only eat 4 to 5 things total each day.  When I add something new, it is then very obvious what I'm reacting to.

All I can say is I'm very excited to be sleeping all night and not needing a neb treatment first thing upon waking (or being woken up by labored breathing).  It is definitely worth a try for all you warriors out there.  You may not notice things at first due to major inflammation, but given time I do think diet is the key to overall health.

By the way....I've had a huge problem losing weight since going into TSW....I was about 160 lbs at the beginning and I went up to 220.  I've tried numerous times to eat healthier and would only lose 5 lbs at the most.   I made it down to 210 the last few months and was so frustrated because it felt like I was barely eating due to all my hives and asthma yet I couldn't seem to lose any weight.  Well I'm happy to announce I'm down to 207.  That''s 6 lbs in 5 days.  I'm sure a few lbs is just water given my high protein, low carb diet. But it still feels good to see something less than 210.

That's it for now.  I'll keep you all posted as the days and weeks progress.

Healing with food

There is so much controversy on whether or not healing can be sped up with a change in diet.  I personally had less itching and hives whenever I cut out dairy and gluten. I have heard mix reviews. I do know that doing a cleansing diet can actually exacerbate the symptoms of TSW however according to natural medicine, one must get worse before one gets better. This seems to be true for many health problems as well.  Today though I am going to start a discussion on healing with food for my hives and asthma.

I have been writing about my hives and asthma for a good year now.  It seemed as soon as my skin healed, my asthma and hives just escalated. It has been very discouraging to say the least.  For over a year I have also began and stopped my all natural diet so many times!  I was not consistent for any length of time due to moving and stress with my husband still living 12 hours away due to the poor job conditions here in KY.

But the last few weeks I have done a slow progression of heading towards my all natural diet.  I have been working part time so I knew I couldn't stick with it all.  About 3 weeks ago I vowed to not eat gluten for at least 6 months. So far not a bite!  I've been very careful about what I am eating and made sure gluten was in nothing. My hives and asthma have improved about 25 to 30%.

My next step was to do a semi fast of bone broth. Knowing broth is high histamine I knew that if I was going to eat anything at all it would have to be strictly freshly cooked organic meat or cooked veggies.  So yesterday was day 1.  4 cups of beef broth I made at home and dinner of cooked chicken with sautéed mushrooms and onions.  No hives and my asthma was reduced by 50% in the last 24 hours.  Today I had scrambled eggs and organic bacon along with 2 to 3 cups of beef broth.  I have some slight itching so I'm thinking eggs and/or bacon are outof my diet for now.  But no asthma symptoms whatsoever today.

Now I know that using my inhaler or nebulizer 4 to 5 times a day is completely uncontrolled!  I am well aware of that. However I refuse to use an inhaled steroid and singulair.  I know singulair is not a steroid but I want to get off all medications.  So taking it would defeat the purpose of pushing myself to eat better.

Of course things can change.  I will keep you all updated on my progress.  As a side note I'm only taking a few supplements during this...my probiotic, my active B's, and l-glutamine for gut healing.  I stopped everything else to give my body a rest.