T Nation

Variegate Porphyria


#1

Hi ,
I’m looking for some advice in how to continue building my body.
Some background info: I’m 44, female, train 5 days a week, love it, but my training is very different than the standard methods.

I have Variegate Porphyria, and I am one of the small % of patients that suffers chronic symptoms. I have been diagnosed twice within 20 years, and my son (17) has it as well.
Because it is a rare disease, most doctors are not educated on this topic, and is also not willing to “think outside the box” … this is why I reach out to this forum:
I often find that the fitness industry is far advanced than the average doctor, and is not shy to think “creatively”.

In short: I’m allergic to many meds (Barbits, Sulphas, Pentathol), Estrogen, sunlight (UVB&UVA), many chemicals, alcohol, and any excessive stress on the body (liver).
My liver is an enzime short, in the system for Heam production (in simple terms,…), so
I sit with 5 problems:

1> I do not get enough oxygen throughout the body, (due to shortage of Heam) and

2> as a bi-product, my body produce and cannot detox toxic porphyrines
(result: something simelar than lead-poisoning symptoms…)

3> I’m often in a state of being “un-well, to dog-ill”, and I have to constantly check
myself, as symptoms can suddenly halt your day / build up slowly to an acute attack.

4> my youngest son has it as well, and as his mom, I need to find the answers in how
to live a quality life with PORPHYRIA.

5> I do not take NO for an answer, and is constantly looking for ways to get myself into
the gym, getting stronger to have a quality life, maintain a healthy looking body for
motivational reasons, experementing for the sake of new ways to educate patients.

So, I have to check everything that I take in, I only drink coffee, water, and protein-shakes,
I use a merina-implant and testosterone cream to keep my hormones (estrogen) low, and is forced to be on a healthy hi-carb diet, and I live mostly indoors, especially in summer as the heat effects us, not only the sunlight.

I supplement with prescription Vita D, Puricos to keep my uric acid levels in check, Iron (as I’m prone to anemia), High Complex Vitamin B (for chronic Neuropathy - especially in the feet) and is on Anti-depressants. I check my bloods every 6 months, and am very well experienced how to deal with Variegate Porphyria…

For many years I maintained that the biggest part of the bodybuilding life-style is the way to go for patients with this disease, with 2 major (and very conflicting) changes -

(1) A healthy portion-controlled hi-carb diet, and

(2) Keep the heart rate under a specific rate (mine is 120-130 bpm)

            ....... YES, it can be done - I have been doing it on my own for 4 years!!!

In 2013 I became very ill with uncontrolled PORPHYRIA, and my immune system played havoc on me…I was in bed for a year. In order to get me to do basic functions (shower/wash dishes/drive my kids to school), I was given Cortisone for 6 months - I picked up 20kg!!! With the fat gain, I also lost most of my muscle mass, and something simple like sweeping the floor or sneezing will put my back out for weeks. Due to be bed-ridden I ended up with a collapsed hip and a lower back made out of glass… (Yes, it was that bad, and even worse - but will not bore you with the rest).

Most doctors advised against me going into weight training, and most patients though I was ridiculous with my theory.

So far, I proved everyone wrong, and although is was a nightmare of a road, I am proud to say that so far, I’m controlling my PORPHYRIA (most days) with what I do in the gym & diet. I am 1,74cm tall, 68,2kg in weight, and would like to up my game to get my body fat % down to (at least) low 20’s (currently I’m on 28,9% - far too high, but considering that I’m on hi-carbs, and its winter… well - excuses only goes so far).

I would love to find passionate experts to work with me, and help me find more answers in how I can get to where I want to be, while staying Porphyria-safe. All my work is for future reasurch on how to get patients better.

This will take a serious amount of “out the box thinking” as well as advisors that has a medical background, or at least understand how the body functions. I love lifting heavy weights, I still maintain that Porphyrics need to keep their testosterone on the high end of normal (or more), and my single biggest drawback is that due to how Porphyria works, and I cannot go into an Oxygen-deficit. Period.

So, cardio is a challenge, but I seem to win with short bursts of HIIT, and 30 min LISS… every day is different, but for the most of it, I know how far I can push myself (most of the time).

While training I use magnesium in my water to help with oxygen transportation to my extremities, and I take my breathing very serious while training. (Neuropathy is a chronic issue that I need to keep in check). I also take L-Glutamine (6mg) before a session, and it works wonders to give me that extra bit of a push.

for more info on VP: https://rarediseases.info.nih.gov/diseases/7848/variegate-porphyria

Im not looking for compliments, or sympathy with sharing this long (very personal) info, but is on the hunt for more guardian angels (as I call them) that help me not only with rehab, and maintenance, but is willing to work with me to go into the next phase…
build, and be the best version for myself, and share how we did it with my son and fellow-porphyrics.

I thank you for your time.


#2

I do not give advices on injuries or medical conditions, sorry


#3

M’am, I think you should start a training log in here.
You sound like you have plenty of brains, but maybe some of the guys can help here and there.


#4

Christian, would you be so kind as to forward this info to folks that you think can help?
Thank you for your time.


#5

I have plenty of experience in chronic illness/ VP, and forced to use my brain.
I trust this message will find the right guys and girls to help figure out how we can go forward. I have a whole community waiting for answers.


#6

Hi There

I too have VP and enjoy training. i am 26 years old and reading up but not finding many answers from the professionals. Could you perhaps give me some information that might assist my training as i am trying to avoid supplements that would harm me as well as looking for supplements that would assist me.


#7

Any time!
List your questions and i wilk do my best answering them (training / disease related.


#8

Firstly , if oxegen isn’t being transported properly, is there a way I can attempt to force oxegen to move better in my body.

Supplements like whey protein, creatine, and pre workout drinks. Are they safe or are there training supplements I should avoid.

Foods, what foods are good for us in our condition and what foods are bad for us in our condition.

Thanks


#9

Most pre-workouts are not safe - it overworks the liver, and our bodies cannot cope with the extra energy.

I use a pure whey protein for my shakes - not flavoured, and no added stuff.

L-glutamine is awesome stuff, as for us it helps with the desribution of oxygen through body.

Magnesium (pure pharmaceutical grade) is always in my water bottle while I train. It helps with getting the oxygen fast in the bloodstream, and bind with iron to make heam.

I eat a high carb dieet. Good carbs!
Wholewheat where i can.
I eat clean, and stay away from sugar, cheese, and yeast.

No alcohol. It is a trigger among many other for porphyrics.
With this said - variegate porphyrics should avoid the sun.

I am a woman, so eostragen is also a trigger for me - so I try to avoid this hormone to spike by using testosterone cream.

I eat every 3 hours, and my diet is a strict portion controled diet that was worked out for me by a dietitian that understands porphyria.

Creatine can be used in smaller amounts than the norm. I have not yet tried it.

I am looking into trying a product with natural plant heam. Called Re-gen Peptides. A consentrated protein with all amino-acids we need, it is safe according to my pharmecist… im waiting for my test batch to arrive.

Do you know your triggers?
Are you an porphyric that suffers symptoms or is your VP dormant?
How can I send documents to you. ?
Im happy to share my diet guidelines with you.

As for training; i do weight training, pilates, yoga and conventional stretch when needed, and i avoud cardio like death - as it burns through my oxygen an cause an attack. This includes swimming!