Health Talk

Persevere!

Still not feeling tip-top, or 100%?  Keep on searching for answers. My doctors now say i definitely have a “pancreatic issue.”  Which would explain the reoccurring SIBO. Apparently, pancreatic enzymes are what help keep bacteria out of the small intestine. But we wouldn’t know this is I didn’t persevere; if i didn’t insist on further testing that i determined i should have, based on my own research; if i let my issues be labeled as “chronic.”

The more we know, the more we don’t know. Individual doctors can’t know everything; you need to be an “assistant” to help them help you.  If you aren’t feel tip-top pay attention. What are your symptoms? When do you have them? Keep notes. Be a detective. Research your symptoms. Read.  Share with your doctor. If he or she is reluctant, be pro-active or find another doctor.  It could save your life, and definitely your health.

Next up pancreatic cat scan. (My doctors suggestion.) Possibly followed by genetic testing to see if i have a predisposition for pancreatic cancer (assuming my cat scan is clean.) Which would enable me to get my insurance company to pay for specialized yearly tests. And we still have to resolve the lack of pancreatic enzyme problem.

I’ve come a long way in the past year in terms of regaining my health. It hasn’t been easy, and i’m not 100% yet. But i feel like i’m getting to the bottom of the various autoimmune problems I have. Its taken perseverance, research, advocating for myself and plain stubbornness when doctors have tried to tell me, “its chronic.”  Be your own best friend. Be well.

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Be Proactive with your health practitioners

You all missed the lovely sight of me having a wire taped to my neck and face, going up my nose, down my throat and into my stomach. With a medical devise at the other end secured around my middle  I looked lovely and it was so comfortable to spend 24 hours like that. How this came about is i was laying on the hospital bed at Beth Israel. The doctor was about to start my special Bravo endoscopy when he asked me if i had certain symptoms. When i said no, he looked surprised as that test was for very specific symptoms. After much discussion, and although my Gastro guy asked for the Bravo test, the Specialist decided to do a different kind of endoscopy which resulted in me being wired from the outside, rather than an implant from the inside.

I started crying as i laid on the bed, and the doctor and nurse, probably thinking i was having a moment of regret from refusing the general anesthesia, said are you scared? I said, no, i’m crying because i think the medical community is incompetent!

I’ve had to push all my doctors to give me the right tests. I told the Gastro guy i wanted further tests to determine if i was having issues processing fats (since i knew i was.) He told me to go to my GP for those tests. I went to my GP and he said the Gastro guy should have given you those tests. I refused to go back to the Gastro guy and insisted he order them. One test, which is a fat fecal matter (I won’t go into the 48 hour pleasantries of that test!) came back super high. Normal is 14g for 48 hrs. I had 300g. And that was even though no one gave me instructions for the test — which i learned only today by searching the internet. That test required that i ate a very high level of fat for 3-5 days before the procedure. I didn’t — i ate my normal low to moderate fat diet. Yet my results were still super high. What does this mean? Well as my doctor said, if the test comes back high it means you have a problem with your pancreas or liver. I’m waiting for my appointment with him to tell me this. Meanwhile i looked up the results and remedies myself.

The special ph test that i was wired for after the endoscopy, also confirmed the same. That my stomach acid production is all wonky and is likely killing all my enzymes before they have time to do their pancreatic and liver jobs. I’m awaiting further test results, but the moral of this story is, BE PROACTIVE. Do your research. If you don’t feel 100%, don’t let the doctors tell you it is “chronic”.  Be your own best friend. Make them keep searching for answers. My mother died when she was not much older than i am, having symptoms not that different from mine. The doctors didn’t do much to figure out why and eventually she was diagnosed with  pancreatic cancer and died quickly. People with autoimmune diseases typically have genes that contribute to these kinds of problems.  You deserve to live a healthy life. Now make your doctors help you get there.

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Are you patrolling your energy?

For me, “health” is a daily changing challenge. I’ve always been a person with super high energy, so having to patrol and assess my energy level before committing to doing something is a change, and one I’m not content to let become the “status quo.”  In speaking with a customer yesterday, I realized that some people have given in to the “chronic” diagnosis that doctors have dished out. Not me. My mother died at an age not much older than I am now, from chronic ailments very similar to mine. Telling me it is genetic is no answer either.  I learned while my mother was in the hospital dying, that everyone needs a medical advocate to combat what I call medical “apathy”.  If you don’t have a feisty daughter fighting for you, you better fight for yourself.

I have SIBO, again or “still”, I’m not sure which because my Gastro Doctor didn’t test me after my last round of broad spectrum antibiotics.  He tested me only when I called and said I wanted a re-test, and sure enough I had SIBO. I asked him why he didn’t test after the antibiotic protocol and he shrugged and said, “its a chronic disease — but what a great idea to test patients after they finish their antibiotics to see if the antibiotics worked.”  That’s when I had a frank discussion with this doctor, telling him my mother had the same chronic undiagnosed issues for a number of years and then was finally diagnosed with pancreatic cancer and died 5 months later. And I don’t intend to die the same way, so I will take the medical community kicking and screaming if I have to, toward an answer and resolution.

Actually, i think I have an answer. I think the root cause is Hypochlorhydria (low stomach acid), and the root cause of that is genetic — a mutation in the MFTHR gene.  My Gastro Dr wanted me to have a plain endoscopy, but after discussing what an endoscopy would be looking for (celiac — yep i have that, H.Pylori –been tested several times and have no symptoms, or GERD –often misdiagnosed as too much acid when its really too little), we opted for the Brava Endoscopy which looks at stomach acid production over a 48 hour period. (You swallow an electronic pill and carry a hand held device for 2 days that registers your stomach acid levels over course of day and night.) Sometimes you have to tell your doctor No, and in my case I said no to regular endoscopy, but yes to Brava Endoscopy.  Doctors get in a rut and a regular endoscopy is the next “normal” thing after an upper and lower GI. But why go thru the delay, annoyance and cost (even if insurance pays, in the end we all pay) when the results of the test are already known? Just to follow routine? Nope. Let’s skip ahead to the Brava, which we are doing in early November.

In the meantime, having researched and re-reseached, and triple checked researched again (I don’t ever really stop researching), I’ve put together my own treatment plan. In fact, I have to say when I started this Quest for health more than a year ago, I lead my doctors toward answers, rather than visa versa.  I found that even alternative doctors are stuck in their ways. We knew more than a year ago that I had low stomach acid problems. My doctor recommended bitters with meals and/or apple cider vinegar  (Acv) or lemon. And lots of fermented foods.  I couldn’t tolerate any of it, so my doctor gave up on that path toward health.

Luckily, I did not. I researched and discovered that low stomach acid can cause intestinal ulcers which then make the remedy (bitters, acv or Betaine HCL) impossible to take. First you have to resolve the ulcers. I found a mention of a German naturopath who recommended Cistus Creticus (Greek grown only) as tea, turmeric and “Vit U.”  I followed that protocol for more than a month, and by golly, it cured the burning in my lower abdomen.  And I was able to tolerate lemon and Acv. But because my doctor was focused elsewhere, I also got off track of the low stomach acid issue, as we discovered I had Hashimotos Thyroid disease (and high Homocystene and most likely the mutant MFTHR gene) and began treatment for that, while sending me to a Gastro doctor for the SIBO (which only got worse with herbal remedies.)

The first round of antibiotics did help reduce or eliminate the SIBO. For the first time in two years, I lost weight, instead of gaining. My energy increased rapidly, and I started a daily cardio exercise regime, in addition to yoga and walking.  I felt great. And then not. Hence my trek back to the Gastro for yet another (my 3rd in a year) SIBO test.

So here I am today. In general, i feel MUCH better (though still on this round of antibiotics), but I still have to patrol my energy, which to me means I haven’t yet attained optimum health.  Here are the things i’ve found that REALLY work for me in terms of my autoimmune diseases.

  1. Methylcobalamin Vit B12. (I get shots and take liquid)
  2. Baobob powder
  3. Pumpkin Seed powder
  4. Selenium
  5. Betaine HCL

Many of us with autoimmune diseases (and mutant MFTHR gene) have issues methylating vitamins and minerals. Which means we can ingest and they can register in the body, but the body can’t use them. I think that’s why B 12 shots don’t work for some. It has to be methylcobalamin B12 (which btw, sometimes hurts more than a regular B12 shot.) At first I needed the shots more than once a week. Now i’ve stretched it out to 2+ weeks, supplementing daily with the liquid version.

I bought some Powbab (baobab) chews at WholeFoods because a nice woman was demo-ing them, they were 50% off and I like to support small upstart businesses. I’ve never joined on the antioxidant band wagon, so I was mostly buying them to be supportive. But by golly, I noticed I felt better taking them. I went off of them for a few days to see if it was that or the pea and hemp protein powder i’d been taking, but no, it was the baobab chew. So I did more research and discovered that baobab seed is SUPER high in magnesium. Another mineral that autoimmune people are deficient in. (I’d been taking daily mineral baths to try to up my magnesium, but it wasn’t enough until I started the baobab.)

Which brings me to pumpkin seed.  I’ve been baking a lot of pumpkins lately, which leaves me with a lot of seeds to bake and munch on, and I also noticed some subtle improvements in how I felt. But I also know that this kind of fiber can be bad for people with SIBO because it can irritate the ileocecal valve, causing it to open and to result in back flow into the small intestines.    So I investigated, and discovered pumpkin seed powder and BONUS, that it contains SUPER high amounts of zinc, another mineral that autoimmune people are usually deficient in. You need zinc and magnesium, Vit B 12 and selenium to have good functioning hormones and thyroid.  Good functioning hormones and thyroid = energy.

So in general, i’ve been feeling better, but not OPTIMAL because my stomach still often felt “sour” or like I had eaten something bad. I started ending my meals earlier and earlier because I noticed laying down sleeping made it worse. Soon my last meal was at 3:00pm, which can be ridiculous to keep up, not to mention, not fun socially. So I resumed my research on low stomach acid. I asked my Gastro Doctor about taking Betaine HCL when we talked about the Brava Endoscopy, and he looked like I had asked him if I should start using leeches to cleanse my blood. So he scared me off it a little, but the more I researched, the more I was convinced that low stomach acid was now my main issue. So I decided to go for it. I started the pills a few days ago, and I have to say I felt better after eating than I have in decades! Which makes sense, as we know the low stomach acid issue started in my mid 20s when I first became a vegetarian after having horrible gastro issues. Despite upper and lower GIs, the doctors not able to figure out why, but as I mentioned in a previous post, I kept meditating on it, and as illogical as the answer sounded, the answer that came to me quietly in my mind was QUIT EATING MEAT.  At the time it was believed I had hypoglycemia, so I was scared to quit eating meat, but I did, and immediately felt better.  My reaction to protein is akin to a hypoglycemic reaction, which as it turns out, is what happens if you have low or no hydrochloric acid in your stomach.  But Betaine HCL is very potent, so PLEASE read up on it, particularly regarding dosage, before attempting this at home yourself. In general, it is best to take only under the supervision of a health professional. I plan to discuss the benefits of Betaine HCL with my doctors at my upcoming appointments.

And lastly, I recently read the Adrenal Reset Diet (ARD). It was an interesting read, but the thing I took away from the book is that carbs help us produce melatonin and protein helps us produce serotonin. We want serotonin at its highest in the day and melatonin at its highest at night. The ARD recommends high protein in the morning, decreasing with each meal, and high carb at night. Basically, the rule of thumb is one carb for breakfast, two for lunch and three for dinner. You can have protein at each meal but far less at night than in the morning. I’ve followed that regime for three weeks now, and I’m sleeping like a baby. Super restful sleeps, waking up far less in the night. Usually at this time of year, with decreasing daylight, I have big issues with sleep, but so far, I’m good. Fingers crossed.

Remember, you need to be your own health advocate and sometimes lead the way. Doctors don’t always know best.

 

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