Katherine's blog

Genetic or secondary porphyria?

For the past month or so I have been attempting a low carb diet, leaning towards a ketogenic diet.  Lots of coconut products, low carb, grain free etc..  (Perlmutter and Wahls) 

For the first few days I felt fine…then I slowly became exhausted and sick. I have had multiple starts, so have seen a pattern.

I finally recognized the signs of porphyriai.  Since I am not taking antibioticsi, porphyria was not on my radar.

Now no alcohol (1.5 glasses of wine  made me sick to my stomach and in bed for an afternoon—2 x), red meat etc..  Reluctantly I pour on the carbs.  In two hours I can rest, and in 3-4 I can function again.  Though I don’t feel great, I don’t feel sick and can function.

Dr. Stratton and Dr. LeGac

I am on a business trip--pretty cool to have the energy to be so productive again.

Simplify for repeatable systems

Repeatable Systems

I know that this is long,  lol as in omg long,  but just in case this is helpful to someone….I went for the lengthy version.

Have been enjoying my communication with another on  this site :)  who has experienced significant progress on the Wahls Diet.  It is through his progress that I mentally revisit the beginning of my massive food change, and realized that I have a few things to share.  And, hopefully this will be of interest to me as I look back over the years.  Some is a repeat, but it helps to understand how I got to where I am today. Hindsight--so illuminating.

Progress....called "work for a reason"

It’s called work for a reason….

This is my housekeeping journal…no fluff here. It is the end of the year and looking over my progress, setting new goals.

I do have my life back—though I am still struggling with the Cpni bacteria. I just need to stir it up for it to let me know that it is still a big player in my life.

Though I attribute it to my recovery, I have not been a strict Wahls Diet person.  Though I may get there—it’s the organ meats.  Omg…but I can do salmon etc.. Most of the principles we had already been practicing. No gluten, no dairy (though I have hard cheeses occasionally), almost grain free, consume fermented foods (not consistently yet) and targeted supplementsi etc..

Methylation, something I should not have ignored

Looking back over the years I see that I should have focused on some issues sooner.  Part of the reason that I didn’t look closer into methylation is that, as soon as someone starts talking about it, I understand and then….blah blah…verrrry complex. Painful.  Until they say that you have to look out for your MTHFR.  See, that cracks me up.

Apparently, I have not one, but two, MTHFR mutations.  Dang.   One from my mother, the other from my father.  Having one is not uncommon or rare, and for that matter, two is not so much either.  But, still impressive to have two MTHFR mutations!  I just want to type MTHFR.

Turmeric as an antibiotic?

Have been doing pretty awesome these past few years.  (Turmeric note is at the bottom)

My most irritating symptom that remains is that my right foot wants to drop.  Exercising more, working out at the gym, though still not consistently.  Take a handful of targeted supplementsi
Things aren’t perfect—but I am in the game.

Somewhat between a Wahls and Perlmutter diet plan. I decided, after much thought and work, to devise my own—which is in the works.  Even making an as I go type of cookbook.

I need the intensity of the Wahls ketogenic  diet, and the support of the Perlmutter plan.   Since I am concerned about Alzheimers I decided to go at it pretty seriously.

Blog update for Katherine

My husband is watching football.....one more week to the Super Bowl.  Thank goodness!  lol 

Just as a matter of an update.  I am tracking my progress in case I write something (article? book?) in the future.  So, Cpni related things are in various parts of my blog.

Flying Without Wings--great book

I am writing this as  a blog entry--during some very low times --mostly last year--I discovered this book.  It was enormousely helpful to me and perhaps this will be helpful to someone else.

For fun I would often go to the Good Will bookstores (replaced Blockbuster Video--sign of the times).

Too busy with school right now, but one day will return to my mini shopping sprees. It is a wonderful library like experience, don't need to return them in time, and on certain days the already cheap prices are 30% off.  Sweet! I just love books.

Another step up....amazing.

I have decided that all these years I must have   been low on serotonin. For many reasons I started taking 5htp--mostly for sleep issues.  But my general mood is better as well.

Also started ashawaganda and astragulus.  Heavens....I can't remember all of the great reasons now.  lol One, my mother has early Alzheimer’s and ashawaganda is believed to help break up amyloid plaques.  Helpful for her, hopefully preventative for me.   But I again feel another boost in mood.  My   sleep is better but not perfect.  Much better overall.  Deeper sleep and fewer nights on the couch.  

Quercetin and Bromelain

Just a quick note as I feel great today--much work to do with the garage disaster....one day it will be a thing of my past!  lol     Just one of those projects that--due to many years of neglect with my illness--just seemed to grow and grow.  

So, I have been ill over the past few months.  Hard to explain--I still functioned but haven't felt great.  Wondered if I was depressed....you know, not happy, not miserable.   Kind of blah.

Looking back I had added quercetin and bromelain due  to my belief that I have developed Dupuytren's on my  right hand (small white lumps--easy to see on Google images).  I am convinced this is what it is since I have had symptoms of it for years and my doctor agreed.

Augmentin and porphyria

Just a quick note--hoping I am seeing some progress and would like some feedback if possible. As written in my blog....lots of words  :)  lol I have MSi, tested positive for Cpni.

Started minocycline--tested this several times--and quit due to horrific porphyriai.  Regrouped, Wahls diet and supplementsi--I have my life back. Hard to describe the transition from being ill for so long.

So, planned on revisiting antibioticsi when I had completed a list of  health building things, such as sauna, ketogenic diet (currently doing--another fabulous increase in energy and clear thinking) etc..

Daily Routines

My daily routine.

I reread my blog and it brings me back to a period of time when I was exhausted and overall pretty sick  

So, it is pretty amazing to me to have my life back to the extent that I am returning to school to complete a degree that I started when I was much younger.  So, January I am scheduled to return and looking forward to it.   It will just take 1.5 years and now that I am not juggling kids kids and kids it should go pretty easy.  Amazing how much discipline I have built up.  And then not.  

Teeth and Mercury--good riddance!

Can't believe it--as a child, my mouth was filled with a highly toxic metal, and then they drilled cavernous holes in the teeth to make room for more. Unbelievable. What is even worse is that it is still being defended by much of the dental industry--including some in my dentist's office. Time changes things........slooooowwwwwly. But first some think you are stupid.... often they don’t like change even if they are clearly wrong.

Mercury should not be near our body much less in our head—our mouth with all the chewing and heat etc. right next to the BRAIN. Lol Just in case it wasn’t clear the location of the mouth relative to the head.

For some the question is will more harm occur by upsetting the fillings? For me it became clear that they had to go.

Consensus on Exercise?

I have done a fair amount of reading....is there a consensus on exercise?

The past few weeks....horribly hot here in Florida.

So, we have have been reticent to exercise....dread it.

But now we have decided to tough it out--like walking in a sauna for 30 to 60 minutes at a time--gentle hills.  My foot drop definitely gets aggravated.  And sweating profusely--after the walk, I feel great.  But it is tough for me--not for the dog or my husband.  lol 

However, most days after I am fine but today I am a mess--very tired, dragging.

Ate a ton of carbs and that helped--a good excuse for some GFCF carby thing.

However, still tired.

ATP--surely part of the issue but I take creatine before I exercise--that really helps.

Gum and Tooth Health

I have been doing some research on healthy gums and teeth.  I have some pockets that won't go away and in the near future will be having some mercury fillings removed. 

I discovered Dr. Ellie  http://askdrellie.blogspot.com/ < who has a simple and inexpensive plan that is supposed to heal the pockets in the gums and strengthen enamel.  http://askdrellie.blogspot.com/p/ellies-system-other-countries.html<   

We are doing everything except the fluoride at this time.  She is quite convincing on the very small amount in  ACT --may revisit that later.  Right now we get fluoride from natural sources, such as green tea.

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