If you don’t follow my Biomed Heals Facebook page then you may not be aware that for the past 2 years or so, I have been having some mystery health issues. Well I FINALLY received a diagnosis! But first Let me give you some back story.
In my early 20’s my stomach started giving me problems.
I seemed to go through “cycles” of having bad stomach spasms and feeling like I was living in the bathroom. TMI here, but I need to share a detailed description in case someone else is experiencing this… I wasn’t constipated, and I wasn’t always having diarrhea. But I would get spasms that seemed to make me think I needed to get to a bathroom urgently. These spasms basically would make me void everything that was inside my GI track over a 2 hour period. And for the most part, it wasn’t diarrhea coming out, it was solid. That is what was so strange. The spasms would be so intense, similar to a labor contractions, or the feeling of dry heaving…but dry heaving out your butt. That’s a pretty graphic description right? Right! But this is what I was dealing with.
These cycles would last a couple months, I would go see a GI doctor, whom would say I had IBS (with out any testing mind you) I would tell them I wasn’t constipated and I wasn’t having diarrhea. But the GI doctors I saw would tell me to just take Imodium. End of story! After a while it seemed I would get out of this cycle on my own somehow, and my stomach would stop having the spasms and life would go back to normal……. until 2 years ago.
Two years ago my life went through some big changes. We moved to a different city, put Anthony in a different school where I had to home school him 2 days a week, Anthony was having a not so great time with behavior and OCD. ( I talked about that here ) My husband started working from home, which ended up not being the best decision. Being around someone whom is stressed and upset all the time is not the best situation. (Thankfully he has a new job now and is much happier). We had some really really shitty neighbors that were doing some shady stuff. Lets just say the police were at their house more than once, and of course this was scary and stressful for me and the kids. Thankfully they were renters and eventually just took off, and now we have nice neighbors.
So yeah…. things were a bit stressful there for awhile and my stomach started killing me again. However unlike the other times, I couldn’t seem to get myself out of the cycle, and other symptoms started popping up along with my horrible GI issues. I started having daily anxiety, and daily panic attacks.
Keep in mind, I was never what I would consider an anxious person. I’ve always been very logical and determined to achieve goals. I’m always planning future events or problem solving. Most of the time these characteristics of mine kept me from being an anxious person. Because if I’m solving a problem, or planning an event, I am in charge. Which is calming. It’s how I deal. =-)
Being a logical person I knew my anxiety was unfounded. But yet, I was having it. Having huge worries about minimal things, right from the moment I woke up. Worrying about getting the kids ready for school, worried my stomach was going to bother me, worried about Anthony giving me attitude first thing in the morning, worried about driving the kids to school. And then when I would be driving the kids to school I would start having panic attacks! My heart would start racing, my palms would get sweaty, my stomach would start spasming, Everything seemed incredibly loud! The kids just talking normally seemed like people screaming in high pitched tones. The kids talking AND the radio on at the same time…… OMG I need to run and hide!!!! And at the same time, I’m trying to hide that I’m having a panic attack from the kids, which is making my anxiety even worse!
My anxiety got to the point where I didn’t want to leave the house. I didn’t want to go to events or be around people that I didn’t know. Even being around the people I DID know, wasn’t exactly a pleasure anymore. I felt like I was on the verge of having a panic attack pretty much constantly when I wasn’t at home. Life started to suck for me every day. I felt like a shitty mother, a shitty wife, and just a pain in the ass in general to everyone around me. Every day I felt like I was just trying to survive. Not only was I feeling horrible mentally, I felt horrible physically as well. My stomach was hurting most days, especially in the morning, I felt exhausted, and my body would feel sore.
I finally decided there had to be something wrong with me. Because I wasn’t ME anymore!! I made an appointment with my integrative doctor in May 2016. During that 1st appointment, from the time I sat down in the lobby, till the time I left the office, I had 12 panic attacks, right there in that building. NOT NORMAL!!!!
At this point I will summarize the time from May to December, all the conditions we checked for:
- Candida (have it)
- Ferritin (low ferritin)
- H. Pylori (nope)
- Celiac (nope)
- Thyroid (looks good)
- HS – CRP (I’m highly elevated means I have high inflammation)
- Colonoscopy (I have a beautiful colon, and yeah the colonoscopy prep SUCKS!!! )
- I Don’t have crohns or ulcerative colitis
- Endometriosis (nope)
I did a 3 month yeast cleanse, and I had 3 iron infusions. The yeast cleanse didn’t help my GI issues at all, and while the infusions did help with my panic attacks, they weren’t 100% gone, and we didn’t know why I had iron deficiency anemia to begin with.
At this point I was just burnt out. I felt like whatever the hell this was I was dealing with, wasn’t going to be going away any time soon. Maybe this was just how my life was going to be from now on. I mean, my moms had anxiety and panic attacks since her 30’s, maybe its just genetic……
One night when I was pretty down, I was venting in one of my facebook private groups. And a friend of mine mentioned getting tested for pyroluria. Now I’ve heard the word pyroluria being thrown around here and there over the years, but I never really researched it or thought much about it.
What is pyroluria?
“Pyroluria is a genetically acquired chemical imbalance in which the body produces an abnormally large number of pyrroles. A pyrolle is a chemical consisting of a 5 membered aromatic ring. These chemicals are the byproduct of hemoglobin synthesis and have no known function in the body; they are normally excreted in the urine. Most people have very few pyrroles in their system at any given time; certain individuals, however, have an unusually high number of pyrroles in their bodies, resulting in a condition known as pyroluria.”
I started reading the symptoms of Pyroluria, and I had MANY of them!! The ones I had I’m putting in BOLD
Most Common Signs and Symptoms
1. Being anxious, shy, or fearful or experiencing inner tension since childhood, but hiding these feelings from others
2. Having bouts of depression or nervous exhaustion
3. Poor dream recall, stressful or bizarre dreams, or nightmares (low vitamin B6)
4. Excessive reactions to tranquilizers, barbiturates, alcohol, or other drugs, in which a little produces a powerful response (low vitamin B6)
5. Preferring not to eat breakfast, experiencing light nausea in the morning, or being prone to motion sickness (low vitamin B6)
6. White spots or flecks on the fingernails or opaquely white or paper-thin nails (low zinc)
7. Liquid zinc sulfate having a mild taste or tasting like water (low zinc)
8. Poor appetite or having a poor sense of smell or taste (low zinc)
9. Joints popping, cracking, or aching; pain or discomfort between the shoulder blades; or cartilage problems (low zinc)
10. Pale or fair skin or being the palest in the family, or sunburning easily, now or when younger
11. Disliking protein or having ever been a vegetarian or vegan
12. Being sensitive to bright sunlight or noise
13. Upper abdominal pain on your left side under the ribs or, as a child, having a stitch in your side as you ran
14. Frequent fatigue
15. Being prone to iron anemia or low ferritin levels
16. Tending to have cold hands or feet
17. Having frequent colds or infections, or unexplained chills or fever
18. Reaching puberty later than normal or having irregular menstruation or PMS
19. Having allergies, adrenal issues, or problems with sugar metabolism
20. Having gluten sensitivity
21. Neurotransmitter imbalances, especially low serotonin
22. For women, belonging to an all-girl family or having look-alike sisters
23. For men, having a mother from an all-girl family or a mother with look-alike sisters, or all the females in the mother’s family bearing a strong resemblance to each other
24. Avoiding stress because it upsets your emotional balance
25. Tending to become dependent on one person whom you build your life around
26. Preferring the company of one or two close friends rather than a gathering of friends; becoming more of a loner as you age
27. Feeling uncomfortable with strangers
28. Being bothered by being seated in the middle of the room in a restaurant
29. Being easily upset by criticism
Less Common Signs and Symptoms
30. Stretch marks or poor wound healing (low zinc)
31. Crowded upper front teeth, many cavities, or inflamed gums or wearing braces (low zinc)
32. Bad breath and body odor (or a sweet, fruity odor), especially when ill or stressed (low zinc)
33. Being prone to acne, eczema, herpes, or psoriasis
34. Reduced amount of hair on your head, eyebrows, or eyelashes, or prematurely gray hair
35. Difficultly recalling past events and people in your life
36. Focusing internally, on yourself, rather than on the external world
37. Tending to have morning constipation
38. Tingling sensations or muscle spasms in your legs or arms
39. Feeling stressed by changes in your routine, such as traveling or being in new situations
40. Your face looking swollen when you’re under a lot of stress
41. Cluster headaches or blinding headaches
42. One or more of the following: a psychiatric disorder, schizophrenia, high or low histamine, alcoholism, learning and behavioral disorders, autism, or Down syndrome
And if you read here, gastro intestinal upset can be part of pyroluria.
So after reading a lot of websites and looking over all the symptoms of pyroluria, and having many of the symptoms across the board, I ordered a testing kit from DHA labratory When I received my results back, while I was shocked, however I also felt a huge relief! I think I cried for at least an hour.
I had pyroluria! At that time I knew who I needed to talk to. Dr. Catanzaro at Health Coach7
To sum up the appointment I had with Dr. Catanzaro:
I have a pretty severe case of pyroluria, and from the information I have told him, and my lab results, I have had it for awhile. Because pyroluria is a genetic metabolic disorder, he highly recommends my mother, and my children be tested also.
Pyroluria influences zinc, B6, and also copper. So I have to get some labs done to determine which one of these levels is low, and which was is elevated. Dr. Catanzaro recommended starting taking P5P (vitamin B6), niacinamide, Primrose Oil, and OptiMag (magnesium) I’m starting one supplement at a time and working my way up.
Today I took my first P5P, and let me tell you, I felt pretty relaxed. Is this how “regular” people feel? LOL It’s been so long since I have felt relaxed. =-( Hoping this isn’t the placebo effect and that the relaxed feeling sticks.
I’m going to go get my labs drawn next week to determine my zinc/copper levels, and once I receive those results Dr. Catanzaro will determine if I need to take a zinc supplement or anything else.
Being this disorder is metabolic, I will need to keep an eye on this for the rest of my life. Which means getting labs done regularly, possibly getting more iron infusions, or needing to tweak supplements along the way.
Below are some links about Pyroluria. I hope you find them helpful.