Knock, knock?

Is anyone still out there??  

So, yes, it's been forever.  I felt pretty good for about a year, working on motility, gut healing and rebuilding my gut microbiome.  Then the election happened and I won't get political but I just tanked from all the stress.  First, my thyroid took a nose dive and I started pushing into Reverse T3.  Worked to get that sorted out, eventually just throwing in the towel and switching from NDT (natural dessicated thyroid) back to Cytomel.  The muscle cramping didn't go away and the itching came back, which are my body's major SIBO signs.  I'm on so many prokinetics that I have the digestion stuff down so it's the only way my body can cry wolf. On New Year's Day I broke down and did a breath test.  Hello Methane!  

Baseline was so much higher than it's ever been.  Super discouraging and I knew I had to know for sure.  Was my IBS due to the two bouts of food poisoning I had in 2010??  I printed out the lab requisition for the IBSChek and presented it to my ND.  Results came back positive on both measures meaning yes, I have had food poisoning and yes, this SIBO is autoimmune in nature.  Even though the events were nearly 7 years ago I still have antibodies well over the cutoff.  Drat!

We know that when SIBO is autoimmune there's not a heck of a lot you can do until the antibodies clear but I added Lion's Mane and Acetyl L-Carnitine back in to support nerve regeneration.

I opted to do Chris Kresser's SIBO protocol because I've tried many of the others.  90 days of GI-Synergy, biofilm disruptors (lauricidin and Interfase plus), probiotics (Megaspore, PrescriptAssist and Ideal Bowel Support) and hydrolyzed guar gum.

Retest last week...

A big ole...  let down.  Are things better?  Yes!  Have my symptoms reduced?  Yes!  Did I expect more from 90 days of protocol?  Hell YES!

So for now I'm trying Atrantil as I hear for some it can really help with methane.  I'm also playing around with fasting.  Not elemental diet, plain old broth only fasting a couple of days here and there.  I feel pretty darn good.  I have a bag of the ITI ED (Integrative Therapeutics Elemental Diet) sitting in my cupboard but I've heard so many stories of "now I have SIFO" or "now I have a horrible yeast problem and it's worse than SIBO", that I'm seriously scared of the stuff.  I do not tolerate carbs or sugars very well at all so there's that too.  Not sure I could stomach going the homemade elemental diet again and that seems to be the only way you can control the amount of carbs.

Oh and can I just say Biohealth rocks for breath testing - Quintron machine, 3 hr lactulose, I did my test on Monday and had the results by Thursday morning.  I NEVER have to go through NCNM/NUNM again.  Woot! Woot!

Such a viscous cycle...

I've been exhausted and pretty miserable.  My thyroid tests came back and while my TPO antibodies have dropped to the low 100's, my hormones still remain on the low side of the lab's range of normal.  It's frustrating because I look at them from a Functional Medicine ideal standpoint and my ARNP looks at the lab norms.  I think if it were just my thyroid I wouldn't be in such rough shape but since it's the whole thyroid-adrenal-gut thing it's been tough.  Freezing (low body temp), hair falling out, exhausted, not feeling rested, water retention, weight gain, loads of freaking fun, just ask my husband.  Thankfully my motility seems to be staying out of the game although I am still doing Iberogast before each meal, ginger between breakfast and lunch and again at bedtime and Vit C and Magnesium with every meal.  Vit C is supportive to the adrenals and my body just doesn't seem to ever get enough magnesium.  I'm trying to do ConcenTrace Minerals in water when I can remember but they are gross :)  I am great at remembering pills because I can organize those in individual containers.  The tinctures not so much, even though they are right next to where I hang out the most.

Update:
My ARNP finally called in a prescription for T3 2.5mcg in the morning and at bedtime.  I wanted to try a T3/T4 combo since my T4 is borderline low but there just don't seem to be many good options out there and she wouldn't prescribe.  So I did what I always do and went rouge.  I went back through all my notes and found that you can get one product that may be beneficial without a doctor and that is Thyro-Gold.  The ND of my nutrition program had recommended it but didn't clue me in that it was not prescription.  I went ahead and ordered a bottle since I had instructions on how to take it and I wasn't sure 2.5mcg BID was going to cut it (I was on 15 mcg BID before I stopped meds and crashed).  I have to say I have felt a bit better this week (after starting meds on Monday), but not stellar and I am still really tired.  The Thyro-Gold just arrived so I think I may start it tonight in place of the nightly T3 and see how it goes.  I react poorly to Adrenal glandulars (they make me beyond exhausted) so I may have to contact the ARNP to increase the dose if I react to thyroid glandular as well.  It's a bit tricky given that sometimes the antibodies can get riled up when you add in more thyroid gland.  We'll see.

This week I've been reading:
The Prime - which I love and find really fascinating.  It's written by a neurologist who is also trained in Ayurveda so she uses lots of herbs for healing and health.
Why Do I Still Have Thyroid Symptoms and Root Cause - just gathering information on how to best support my body and what my options are.  It's good to be educated!
Thank goodness I have so many great libraries in such close proximity to my house.  I can't imagine the cost of buying all the books I want to flip through and then where the heck would I store them?!?!?

Merry... err... Happy Holidays

Sorry I haven't been posting much.  Lots of experimentation, questioning and thinking.

I'm feeling pretty darn good.  The only SIBOesque symptom I have on a regular basis is bloating, although that could be related to the permeability that's still lingering or the H. Pylori (if that's still there) or my inability to digest protein well coupled with my lack of digestive support due to H. Pylori protocol.  I've had constipation a few times in the last month but not horrible.

Feeling much better after working on the adrenals.  I have been using the adrenal glandulars, DHEA and licorice root.  I've worked up to one drop (1.2mg) of DHEA with breakfast and one drop with lunch.  That was ROUGH.  For the first 3-4 days I was sooooo irritable, angry and just climbing out of my skin.  I don't know how bodybuilders ever survive actual hardcore steriods.  Phew!  If you recall my ND recommended I work up to 3 drops, 3 times a day and honestly I don't know that that kind of dose is warranted.  Less is more!  I've been using a couple of drops of licorice with lunch to help extend my cortisol since afternoons are my biggest drop in energy.  I have not added in the Pregnenolone yet.

I ordered some mushrooms from Four Sigma Foods after listening to this podcast from Ben Greenfield.  He can be a little out there but I believe he is smart and does his research on things that he himself uses.  Like me he is also interested in a lot of self experimentation.  So while mushrooms themselves are a big NO NO for SIBO I decided I'd give them a whirl since they can be so supportive of the other issues I am dealing with (thyroid, adrenal).  And my husband LOVES mushrooms so if I don't like them I'm sure he will.  I ordered the Lion's Mane, Reishi, Cordyceps and Chaga bundle since they were on sale plus there was a coupon for an additional 15%.  It's still listed on their site but I'm not sure it's still active.  I wanted to try the hot chocolate blends but they have nightshades and I'm avoiding those for now.

After finishing the digestion portion of my nutrition certification class and learning a lot about the structure of the intestinal lining I decided to try coconut elimination for a while.  I cannot put coconut on my skin or lips without them getting super chapped.  It takes about 3 days and then the skin feels like it's going to be peel from my body.  It's weird.  The intestinal lining is made of epithelial cells, obviously different from the skin, but seemingly a lot more delicate.  As I've restricted my diet more and more I've added in more coconut oil and more coconut milk.  Given the response of my skin I thought it would be good to take a break and see what happens.  Oh and I was negative on the Array 10 which is part of why I kept ignoring my external reaction.

After listening to Dr. Keller on the Phoenix Helix podcast and her extreme caution about probiotics I cut back on them for a while.  I don't know why.  I was a patient of hers and didn't find her methods super effective.  It only took a few days for me to realize I feel so much better when I take a ton of various probiotics.  I resisted listening to the podcast for a long time and now I know why.  Of course Dr. Ruscio came out with his own video and said if you tolerate things there is no reason to get rid of them.  That speaks to me a lot more than possible unnecessary restriction.

I got my UBiome results back.  I haven't had a time to really dive into them but I can tell you the reporting is so much faster and more detailed and easier to understand than The American Gut Project that I did before.  And UBiome often runs smoking deals where you can get 3 kits and run time lapse self experiments on your gut biome to see how much of an impact your treatment or diet or exercise or whatever impacts your bacteria.  Fascinating!

I hope everyone enjoys their holiday season whatever they celebrate!  Remember to take time to take care of yourself.  You deserve it!

Current Protocol

Adrenals:

• Adrenal Glandular - 100mg breakfast and lunch
• Licorice Root - a few drops with lunch (helps extend life of cortisol)
• Cordycepts - one tablet with breakfast
• DHEA sublingual - up to 4 drops with meals (haven't added this yet)
•  Pregnenolone sublingual - up to 4 drops with meals (haven't added this yet)

Thyroid

• Zinc - breakfast and dinner
• Wobenzyme-N - 5-10 caps, 3 times a day on an empty stomach.  WOW!  Just looked through my notes and found that.  Wonder if she meant 5-10 separated into 3 doses or up to 30 a day!  That's a ton of pills!

SIBO/Gut Support

• Digestive enzymes with meals
• Lion's Mane at bedtime*
• Acetyl L-Carnitine at bedtime*
• L-Glutamine between meals and at bedtime
• Zinc L-Carnosine between meals and at bedtime
• Iberogast before meals
• Megaspore - 2 caps with lunch
• Orthobiotic/PrescriptAssist/Primal Defense (rotating) - between meals

H. Pylori

• Mastic Gum - 2 caps with meals
• NAC - 1 cap with meals
• Biocidin - before meals (both kills and provides biofilm disruption, contemplating switching to Interfase Plus and Allimax)

*Lion's mane and Acetyl L-Carnitine are thought to help with nerve regeneration in the small intestine.  Even though I've had lifelong motility issues I don't recall having the bloating or other issues until after the two food poisoning incidents 6 years ago.  I'm running off the assumption that they were the tipping point.  Although to be honest I don't remember a heck off a lot about my health from the first couple of years of my son's life.  My adrenals just tanked after my pregnancy and it's all a blur.

Has it really been that long...

I would blame it on the holidays but I really don't get all up in arms about it.  We don't make many obligations and we don't buy gifts.  What did happen is I got a whopper of a cold from my son just after Thanksgiving.  I even ended up taking Mucinex D several days.  For him it landed in his chest for me it socked into my sinuses.  I really didn't feel that bad but ended up draining out a lot of bloody mucus and my massage therapist said my sinuses felt really puffy.  The draining was almost worse than when it was stuck.

Oh and I had another screw put in my jaw just as I was getting sick. That helped a lot!  And another screw came out yesterday (meaning I took it out).  They wanted to cut my gums and screw into my cheekbone but I said no. (Um, no way in hell!).  It makes sense to pull on the jaw if you are trying to intrude the teeth but to pull on the cheekbone to push up into the jaw just seems like you are asking for trouble.  

I finally finished up my Matula tea treatment for the H. Pylori.  I have another month of the biofilm buster (biocidin), Mastic gum and licorice root and then I retest.  I can't wait to be able to take Betaine and/or Ox Bile again.  I just feel like I am not breaking things down and my digestion feels more sluggish.  I do not like it.

I've been taking adrenal glandular support and licorice root when I remember to help prolong the life of the cortisol circulating.  I need to add in DHEA and Pregnenolone although I am toying with adding Cordycepts first.  My mentor is against this, she feels that formulas provide a better synergistic effect.  

I went over my thyroid tests with the ND on Monday and my thyroid hormones were borderline so no need to supplement, Yay!  But my TPO antibodies were in the high 200's. She thinks it's due to the H. Pylori treatment.  I'm hoping so!  She recommended Wobenzyme-N to help bring the antibodies down by reducing inflammation.  I've heard great things about proteolytic enzymes.  Livestrong calls bullshit on them but they help the body break down protein so if I don't feel like they are having a benefit outside of meals I can take them with meals since I can't break down protein completely by myself.

Oh and no more itching!  Ha!  Stupid ass lactase!  In light of the Hashimoto's confirmation it's back to LDN.

I eat dead food...

according to Ayurveda, the sister science to yoga.  Ayruveda says food should be prepared fresh and eaten right away. Leftovers, items that have been frozen or canned are apparently dead and do not feed the body.  I can only seem to chew veggies if I cook the bejeezus out of them so I'm sure there is not much nutrition left to them at all.  Is it worth eating them at all??  A friend posted this on her fb group a while back but I promptly ignored it.  There's   I'm eating too much, not taking my time and chewing enough (hard with all the orthodontia) and just feeling overly full most of the day.  I am off all ox bile and HCL while I treat the H. Pylori and that's not helping at all.  I read today that the itch can come from H. Pylori (my friend always suggests histamines, which I DO NOT want to hear!).  I'm banking on the pylori (and lactase) for now since it's primarily after meals and all freaking night after my Resolor. Need to do something about that.

And I was reminded of this today which has a lot of similarities but with actual science behind it.

As I mentioned before if I eat the same thing every day my digestion stays spot on but I am really feeling the need to shake up my diet.  I feel swollen and kind of gross.  I'm eating waaaaaay too much chocolate.  I keep threatening elemental (which would not be good for my adrenals or thyroid) or just scrapping the whole lot which wouldn't been good for my SIBO.  I need to come up with a reasonable middle ground.  I just can't imagine not reaching for my frozen jars of (dead) soup.  I did drag out the dehydrator today and dehydrated some kale.  I pulled out a raw bread recipe book in hopes of making some raw wraps out of greens and herbs.  We'll see how well I tolerate them.  I really don't want to pull out my juicer, it's just a beast and I hate cleaning it.

I do know I need to make the time to do my daily yoga practice, meditate 12 minutes a day (that's the minimum necessary for positive brain benefits) and take time to read.

Alright, enough bitching and moaning for now :)  Everyone have a Happy Thanksgiving!

Update on things...

I had labs run as far back as 2011 that showed my alkaline phosphatase low.  I asked my ARNP why and she just shrugged it off as did the ND (who was sure I had candida) back in 2013.  I did a few searches on doctor Google but didn't come up with anything.  I spoke with the ND from my nutrition program last week and she took one look at my labs and said, "wow you have a big zinc deficiency! Your alkaline phosphatase should be around 70.  That could be a big reason why you are not converting T4 to T3".  Mine has been hovering in the 20's and 30's. 

This is information from HealthGuideInfo.com (not sure how reliable they are):

"Reduced alkaline phosphatase levels are associated with a number of conditions including zinc deficiency; folic acid deficiency; low levels of phosphorus; vitamin B6 deficiency; vitamin C deficiency; excessively high vitamin D intake; malnutrition involving inadequate protein assimilation (this can also be caused by hypochlorhydria – low production of stomach acid); Celiac disease; hypothyroidism; anaemia or inadequate parathyroid gland function."

Um, okay then!  I know I have inadequate protein assimilation and I'm def having thyroid issues.  

On to the DUTCH results.  Turns out I have true adrenal insufficiency.  Try as it might, my body is not producing much cortisol at all.  My body is just doing a really good job utilizing what does come out.  The low cortisol metabolites indicate that my body is hanging onto the cortisol in circulation as long as it can.  My strong, resilient genetics at play once again.  What I need to do?  Be kind to my body and give it the time it needs to rest and heal.  Add in Zinc glycinate supplementation, add in some adrenal glandulars and a bit of DHEA and pregnenolone to support my adrenal function.  She also wants to see some current thyroid labs and feels like I probably need to be on a natural thyroid medication like WP Thyroid or Nature-throid.  I don't like that but I also don't like feeling run down and cold all the time.  

She said that maybe since organs and tissues are not keeping up with demand they are shutting down hormone production to make me rest.  That seems really dramatic but true of humans today.  We push on and on ignoring all the subtle, and not so subtle, clues to slow the heck down and let the body rest and replenish.  

I just really don't want to give up hot yoga now that I'm back in the studio.  It feels so good to be HOT.  I'm just going to have to limit myself to one or two days a week of hardcore hot stuff and make sure I plan for ample rest afterward.

My digestion stays good if and only if I am super strict with my diet.  If I eat the same thing I have been eating for months then everything stays spot on and my weight starts to reduce. If I try to add something new I bloat, gain and am generally pretty freaking irritated.   I made a chicken "noodle" soup with the canned broth I made from chicken heads and feet and that did not go over well at all.   None of the vegetables were new so I assume it was the broth. Frustrating to say the least.  It seems like it is taking me forever to get through this H. Pylori program.  Definitely need to practice my patience.  Just in time for the holidays!

Results finally - Breath Test #8

Results from May 2015. Breath test number 7.

Results from this month after gacking down guar gum with my herbal kill supplements.  

Not really what I was expecting given that my C and bloating have pretty much resolved. I'm still trying to wrap my head around it.  And it's not negative (like it says) because any methane at or above 3 is positive and really you shouldn't have any methane at all. And if there were no methanogens to eat the hydrogen gas, the hydrogen numbers would be higher. That said, I'm not having any real SIBO symptoms, maybe a little mild bloating throughout the day but not enough to change what I wear (I'm really self conscious when I have a gut and great at hiding it).  I am having D which is a super nice change.  Those with C understand :)

AND notice the date tested is 10/17, a full 10 days ago.  I sent an email questioning why I didn't get the results sooner, especially since I called on the 21st and was told they weren't ready.  Their response:

Hi Shari,

Our turn around time for sending results to the ordering provider for tests taken with kits at home is no later than 2 weeks from the date the completed kit is received in the lab. After samples are tested, they also must be interpreted and the results finalized before we release the results. This depends on how many other kits we received ahead of your kit.

We also do not release results directly to patients unless/until we receive a signed release of information form.

For SIBO tests taken here at the clinic, the turn around time for results is faster, either same day or next day.

Let us know if you have any other questions.

Best,

Audra
--
Audra Lee, M.S.
NCNM SIBO Lab
P 503-552-1931
F 503-444-6709

My response was along the lines of "the numbers are the numbers", it's not like they add any sort of interpretation or add a narrative or really anything.  I also may have said I recommend to others in the SIBO community that they find another lab with a reasonable turnaround time :)

Okay, enough ranting!!  

I'm good where I am so I'm just going to sit on it for awhile, continue with the MegaSpore and hope that the hype is right and it does contain the number one strain used in Europe to treat SIBO.  Although I've never seen anyone from Europe actually talk about MegaSpore or using probiotics in the forums (I guess if their SIBO is gone they wouldn't need to be there too!).  I'll stick with low FODMAPs for at least 6 weeks and decide what to do then.  Until then I'll focus on getting my adrenals and thyroid noodled out.  My worry is until this infecton is gone nothing else will heal.  Guess time will tell!

Back and forth...

It's so hard to stick with any course of action with SIBO because your day to day experience can fluctuate so dang much.  I woke up this morning looking 6 months pregnant and up a pound.  What the hell did I do?  Nothing different really.  Indulged in a bit more chocolate than usual but it was early in the day and doesn't warrant that kind of reaction.  The other thing.  I broke down and make some banana muffins with almond flour, coconut flour and flax eggs.  Flax just a tablespoon spread between 8 muffins.  It can't be that really?  

Since bingeing on potatoes the last month or so off and on (not true bingeing, but cautious SIBO bingeing ;) I have been craving more carbs.  Which is why I made the muffins.  I should probably just stay the hell away from it all since it just seems to turn me into a wild eyed crazy carb monster.  Maybe my husband will make the connection and stop frying up potatoes in delicious beef tallow and putting the plate RIGHT IN FRONT OF ME.  And if you haven't tried it, please don't.  You will not be able to stop and before you know it you are shopping for a Fry Daddy.  Also Tom O'Bryan mentioned something about issues with potatoes and lectins in recent research here. "I have three articles I was just reading today about white potatoes may cause permeability because of the lectins. People who have a lectin sensitivity, if your food has lectins in it, it will cause permeability." Surely I'm okay with lectins...  not sure I want to know!

Which leads me to my whole point which is, all the doctors say if you are still having symptoms you should keep treating unless your test is negative then you really need to look into other causes.  My friend Tim had similar numbers, no symptoms.  Look at him go! Definitely an inspiration.  And then there's Katie a woman in a couple of the fb groups I'm in. She worked her ass off to kick not only SIBO but H.Pylori only to continue having symptoms.  Thankfully she continued to question and has an awesome ND who discovered a cyst on her ovary. Her blog is so funny.  Hoping for a speedy recovery for her!  Which leads me to, I need a damn breath test already!  I have an appt with my ND on the 23rd but he's so busy he doesn't have time to get me kits whenever I want.  I have a local ND that I really like and she's great about billing our insurance and using labs that our insurance covers (my son saw her), but how much does she understand about all this?? Does she even have to understand all of it to be helpful??

Still tapering off my thyroid medication.  I saw my general ARNP on Saturday and when I said I was on T3 she said, "you just need to take iodine".  Um, wow!  She hadn't looked at my labs, asked my symptoms, nothing.  Not to mention that you can't just add iodine to your supplement regimen without adding selenium. 

Still messing around with adrenal support.  Clearly I need a new ND :)