Getting Healthier Now

A Blog About Digestive Health

A Sobering Wake Up Call: B12 Deficiency

Yes, it’s about time for a blog update, but where do I begin? After nearly 20 years of unexplained medical problems, in mid-July I finally crashed.

I’d been getting progressively sicker since a year ago, the summer of 2014. By the new year, 2015, financial problems led to lots of stress, then flares of SIBO. I became bed-bound, with loud tinnitus, insomnia, weight loss, low-grade fevers, and a total lack of appetite. I could no longer work at my job.

I also lost touch with plenty of friends during this time. I can’t say I blame them, as I had become so impaired I didn’t have much to offer. This only compounded the stress.

As you can see from my blog, I’ve tried quite a few treatment protocols over the years, and it seemed everything would work for a while, then I would lose ground and wind up feeling worse than ever. In recent months: iodine, lactoferrin, probiotics – all seemed to hold so much promise, they would initiate healing, then for some unknown reason, those benefits would slip away.

In early July I began waking with hot flashes and flushing, blood pressure spikes, rapid pulse – an intense resurgence of POTS symptoms. However, this time it got worse: my back and neck were both in terrible pain. I had electric zaps in my hands, a metallic taste in my mouth, a sore tongue, and strangely burning, aching feet. Soon after this, frequent spasms began in my lower back, and my groin became numb.

A week or so later, my hair began falling out, my vision became so blurry I could focus on nothing, my nose felt constantly stuffy yet there was no mucus, and I completely lost my sense of smell. My balance was way off, and I found myself stumbling around the house. Next, my skin took on a yellowish hue, and when I went for a dog walk, every step made me feel on the verge of a seizure. Fluorescent lighting had the same effect.

Worst of all, my mind was going. I had huge short term memory lapses, bewildering rages over small annoyances, waves of panic. When spoken to, it took me about 20 seconds to rewind what I’d just heard, otherwise I couldn’t register the meaning of the first few sentences. It was an obvious, accelerating, cognitive decline, and needless to say, pretty terrifying.

I would go visit my doctor, and he was puzzled by everything, but especially confused by the tachycardia. During this time my pulse was usually over 100 at rest. EKG results were normal. Blood work looked generally good.

But it was clear things were getting worse. My eyes looked dull and red, I’m 6 feet tall and now weighed 144 pounds. Yet with no diagnosis, there was no treatment plan, so I really had no idea where things were headed, and my doctor wanted to just continue monitoring my condition while I rested.

One day, due to my increasing back and neck pain, I was doing a search on PubMed for cervical stenosis, for degenerative spinal diseases. In the side bar I saw a study “Dual pathology as a result of spinal stenosis and vitamin B12 deficiency“, and that was it.

The next step was to explore the long list of vitamin B12 deficiency symptoms, realize I had nearly all of them, try taking some B12 (I started with 1 mg a day of this brand),  and for the first few days I felt hugely better.

My vision had been blurry for a few days, and it suddenly sharpened up, colors became richer, and I noticed I could focus both near and far, better than in my teenage years. My breathing was incredibly clear (not a hint of asthma), and my gut motility was perfect. One night I checked my pulse and it was 60.

The pain and numbness in my lower back and groin, plus the pins and needles sensations in hands and feet began improving. My neck felt more stable. Also, the burning hot abdomen and neck I’d been experiencing for years suddenly switched to that cool-to-the-touch (very normal) skin temperature from decades ago, probably because my parasympathetic nervous system was finally working.

My mood continued to get better, including emotions both happy and sad. I’d notice waves of release and relaxation in my body, borne of sentimental thoughts. I began to focus outside myself, to check in on friends again. To be faced with rebuilding all of this is bitter sweet.

And progress is rarely linear. By day 6 I realized that the lozenge form of B12 I started with was probably fine for healthy people but contained mannitol and sorbitol, which created a lot of bloating, so I switched to these capsules without additives. I decided to crush each capsule first, by chewing it, then would park it under my tongue to aid absorption. Chances are my gut isn’t able to pull B12 from my food, although until I get further testing I won’t know for sure the root cause of my deficiency.

Where am I now? I got the methylmalonic acid test results back from my doctor. The reference range is 87 to 318, and my levels were 334, outside the upper limit of normal, indicating (pretty accurately, from what I’ve read) low B12 levels. MMA is neurotoxic, so I do want to see this number drop, and chances are it will come into balance as I continue supplementing B12.

Incidentally, vegetarians are far more likely to be B12 deficient, and since I am a paleo-dieter, who ought to be getting enough B12 from the animal protein in my diet, my doctor never thought to check. Based on my experience, it can happen to anyone, and especially if you have SIBO, or small intestinal bacterial overgrowth, where upper gut flora – migrate up from the colon – and consume our nutrients before we can.

I’m seeing connections to so many other problems that could be B12 deficiency-related. POTS, for example, this study links to adolescents, but maybe it applies to everyone, old and young. Crohn’s disease is a definite risk factor, but SIBO and ulcerative colitis are also related. Anyone who had anesthesia with nitrous oxide can become depleted of B12, and this describes me, also.

I wonder about B12 deficiency and the phenomenon of being “floxed” by fluoroquinolone antibiotics. Do these drugs deplete B12, and would this explain why some of us get really sick from taking them, and others don’t?

Since taking B12 I’ve noticed I can tolerate a lot more foods that used to provoke what felt like candida yeast overgrowth symptoms, and I do know my white count was mysteriously low in recent years. B12 is a critical component for immunity.

Am I feeling confident about the road ahead, and how best to approach healing? Not at all. I plan to see a neurologist to get a clearer picture of how to proceed, but scheduling this will take time. My primary care doctor has been balking at simple questions, such as “how much B12 should I take”, so I’m thinking it’s best to be conservative, and take no more than 1 mg (1,000 mcg) per day. I also know the MTHFR gene mutation could play a role, and I may need to supplement methylfolate, but when I’ve tried taking just 800 mcg I feel worse, so for now that’s on my avoid list.

The most frustrating thing of all is what’s improved and what’s stayed the same. My back and neck pain are getting better. I am seeing sleep improvements, my mood is generally upbeat, asthma is totally gone, my mind is getting sharper (although my memory is not what it was in June).

Unfortunately, while I did experience a burst of energy around days 4 through 6, I crashed shortly thereafter and am feeling heavy fatigue now. I am back to spending most hours of the day in bed, and my ability to focus is greatly diminished. Is this typical for recovery?

I’ve struggled to find information on how most of us respond to supplementation of B12. Not everyone improves, especially when diagnosed late, but of those who do, they often say “give it 2 or 3 months” and I’m now at three weeks.

My hope is that others out there will read this, and some of you will have your own recovery stories. With the understanding that we’re all different, what was your own path to healing, and what steps did you take to figure this out? Maybe you’re someone in my own situation, and would like to compare notes. Please share whatever you can with us in the comments section.

Probiotics: Larger Doses Making a Big Difference

Lactoferrin for SIBO? It seems to be helping most by lowering my inflammation, and I’ll continue taking it daily, but I’ve noticed it also tends to constipate me, which is a bit of a paradox because while the lactoferrin should help kill pathogens and destroy biofilm, a constipated gut is at continued risk for SIBO.

In an effort to counteract this, and get my gut moving, I’ve gone back to the most basic approach of all: probiotics, and lots of them. I figure I can combine this with the lactoferrin, taking the two of them offset as many hours as possible. Lactoferrin with food, and probiotics between meals.

Why not more of my kefir and sauerkraut? I’ve found “enough” is helpful, but too much of either can make me back slide, and I’m not sure why. Especially when my GI tract is sluggish, I think kefir may worsen SIBO by building more biofilm. If anyone has ever tried cleaning a used kefir mason jar, with its thick accumulation of flora after just a few batches, you know what I’m talking about.

If I could deposit the healthy kefir biofilms exclusively in my colon, that would be another matter, but I’ve tried this, more than a few times. Unfortunately, retention enemas with kefir have given me relief only in acute situations, and longer term use doesn’t seem to address all my symptoms.

Probiotics, on the other hand, generally don’t have a reputation for colonizing our guts. Many see this as a drawback, but in the case of SIBO, I am hoping it’s an advantage. Perhaps these temporary upper gut residents will outcompete small intestinal pathogens without setting up shop and compounding the problem.

Recently I came across an interesting evaluation of some common probiotics on PubMed’s site. Note the section on VSL#3, which is a mixture of gram positive bacteria (which do not contain highly inflammatory lipopolysaccharide). Like many probiotics, VSL#3 is a mixture of flora originally harvested from a healthy human donor.

Take note of what it says about VSL#3 helping to heal the gut barrier function. “Leaky gut” is another term for this, and I’ve no doubt that’s one of my biggest problems.

Barrier function was also assessed using mannitol flux assays and after 4 weeks of VSL#3 treatment, barrier function normalized in these mice. Using the T84 human intestinal epithelial cell line it was further shown that VSL#3 and products secreted by these bacteria enhanced intestinal epithelial barrier function in vitro, and pre-exposure of T84 monolayers to VSL#3 provided a dose-dependent decrease in cellular invasion by the pathogenic bacteria Salmonella enterica serovar Dublin. A subsequent study corroborated these findings and further found that VSL#3 upregulated the expression of several mucins which are postulated to play an important cytoprotective role in host defense against pathogens [21].

The expense is a factor, and the primary reason I’ve never stuck with VSL#3 for very long, but could it be a “poor man’s fecal transplant”? With FMT being very costly in a clinic setting, and since I don’t currently have access to a donor for DIY at home, I’m going to give this a shot. The only difference being I’ll take this probiotic orally in addition to retention enemas.

Speaking of upper gut colonization, would the fact that VSL#3 is human-sourced mean its flora will attach permanently to the wall of the small intestine? Likely, the answer is no. This has something to do with how probiotics are manufactured. For some reason, the adherence of probiotic strains on the gut wall is usually not that good, no matter how the flora was originally harvested.

I began with a retention enema using 8 pills of VSL#3 in about 4 ounces of distilled water, using an empty and rinsed Fleet enema bottle. About 5 minutes later I felt my long-gone sense of smell returning. I noticed a basket of essential oils that had been on my dresser for months. Hard to imagine my nose had been so impaired this wasn’t fragrant to me until now, but that’s indeed the case.

About 20 minutes later, I noticed my tinnitus getting quieter, and my whole body relaxing. My mood improved. Joint pain was lessened, also.

Oral administration of VSL#3 was my next step. I took 8 capsules, 2 doses of 4 each, that first day.

I’ve been taking 4 capsules, 3 times per day, between meals, ever since, and drinking 2 pints of distilled water with each dose. I add trace minerals to my water. I only did the retention enema on day 1, and am hoping I can stop it altogether or reduce to once per week.

Now, three days in to the 12 capsules per day oral protocol, here’s a an intriguing list of symptoms where I’m definitely seeing improvements. It’s worth noting a great many of these issues came about after taking fluoroquinolone antibiotics. How much of being “floxed” is due to altered flora?

I should underscore that probiotics are nothing new for me, and VSL#3 is one I’ve used in the past to stop ulcerative colitis flares, but I’ve never taken it in this quantity, nor have I done it with the same frequency, plus I’m also combining the doses with enough water that my stomach acid is probably being diluted, which means more flora survives to reach the colon.

I also think, subjectively, my symptoms were never this bad in previous years, so I never had this far to “bounce back”.

So many symptoms are linked. Overall, I sense a restoration of my vagal nerve function. Huge relief from a constant stuffy nose (neurological, not from typical blockage), my pulse and BP are nice and low, and my sleep patterns and mood are evening out. No more blazing hot colon, lower back and neck, either.

The one thing that hasn’t changed yet, and this is fairly upsetting, is fatigue.

At first I felt strength returning to my legs, and I’d hoped this effect would snowball, but it’s less noticeable now than it was when I first started. Maybe I need to maintain the retention enemas. Another possible explanation for this is lipopolysaccharide being released, as gram positive flora is duking it out with the gram negative ones. If it’s happening in my small intestine, this means more LPS in the bloodstream. Perhaps sorting it all out is just a function of time.

Fatigue is the core of my illness, and Cipro and Levaquin were the triggers for it. I hope as I continue my therapy this will resolve, and it’s clear 3 days of anything gut-related is not enough time to know the longer term potential for healing.

I do hold out lots of hope I can eventually get my energy back, given all the other smaller improvements I’ve seen in the early going. I actually had my housemate take a “before” picture last night, because I’m so shrunken from the SIBO: 6 feet tall and 145 lbs. Underweight is nothing to mess around with, and I know it can significantly impair immunity. I had to do something, and i think i’m finally on the right track.

Have you tried a similar approach, taking large, longer term doses of probiotics? Which type works best for you? And if anyone has figured out a way to “brew” them to reduce the cost, let us know in the comments section below. Thanks.

 

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Conquering Advanced SIBO – Lactoferrin to the Rescue

I’ve probably had small intestinal bacterial overgrowth since childhood, and I’m now in middle age. This is a difficult-to-treat condition where colonic bacteria drifts up, beyond the gateway between the colon and small intestine, known as the ileocecal valve. This happens because the valve is stuck in the “open” position, either due to neurological impairment or constipation, which backs up the entire GI tract and keeps the valve propped open with the fecal stream.

In the early stages people might notice they’re developing rosacea. Most western medical doctors claim there’s no known cause for this skin condition, but in recent years practitioners with a more holistic approach, like Chris Kresser, and others, identified a study from decades ago where common probiotics were proven to be an effective treatment for it. Look for more on this in future GHN blog articles.

Besides rosacea and acne, other early stage SIBO symptoms might include low-grade fatigue, mild mood disturbances and cognitive impairment, minor food intolerances, aches and pains, low-grade, intermittent tinnitus (usually after meals), urinary and sinus infections, ear aches, gingivitis, halitosis, trouble staying warm, mild insomnia, IBS, trouble gaining weight.

Unenlightened doctors were treating my SIBO symptoms, such as sinus infections and prostate problems, with more antibiotics, which was unfortunate considering these drugs (Cipro, for example) likely caused SIBO in the first place. Fluoroquinolones contain fluoride, which binds iodine receptors and (among other things) impairs thyroid function.

SIBO

About six years ago I began to feel my whole gut, from the front around to my lower back, becoming burning hot. I could feel that same heat in my neck. Along with this came increasing brain fog and tinnitus. What’s happening with SIBO is simply upper gut fermentation – a low grade infection of the abdomen. With every single meal consumed, bacteria is fed first, then we get the scraps.

In healthy people the small intestine does have some protective bacteria in low concentrations, but in SIBO the ranks and type of flora resemble the lower gut populations, and these misplaced microbes can cause a lot of damage, by inflaming the small intestinal wall, and running amok systemically, with both toxic byproducts of fermentation and the bacteria themselves in the bloodstream.

This is made even worse when gram-negative bacteria are involved because they boost levels of lipopolysaccharide, a part of their cell membranes, and LPS is one of the most potent triggers of inflammation in our bodies.

Diet plays a role, with the distinct possibility that higher fat consumption fuels the growth of gram-negative bacteria. Paradoxically, this suggests those of us who switched to a higher-fat Paleo approach might be inadvertently increasing inflammation from gram-negative flora and LPS. It’s a  controversial theory, with a lot of strong opinions on all sides, so count on reading more of this in future GHN articles, too.

As SIBO becomes more advanced, think of those 14 feet or so of narrow tubing, the small intestine, where scopes and medicines have trouble penetrating, and how hard it might be to remove these uninvited guests. Bacteria and yeasts, such as candida, build biofilms that act as hardened bunkers against the gut wall. Think of tartar on your teeth, which is also biofilm, and it becomes clear how impossible it might be to cure.

Sadly, SIBO can become “self-worsening” because toxins further impair nerve function, which means the “migrating motor complex“, or MMC – which are peristaltic cleansing waves that normally clear colonic bacteria from the upper gut – this safety mechanism gets even weaker, resulting in more accumulation of bacteria and yeasts, then further inflammation develops.

Another paradox is mounting mineral deficiencies, from malabsorption, yet being unable to take vitamin and mineral supplements without fueling the problem. I am finding magnesium is especially difficult to take when upper gut fermentation is happening.

Later stage SIBO symptoms include crushing fatigue (which I’ve had since my last dose of Levaquin in 2009) to the point where it’s tough to get out of bed. Most people also have wide-ranging food intolerances, loud and constant tinnitus, major brain fog, personality changes (depression/anxiety, cognitive decline), tremors, hormonal problems, cardiovascular issues (tachycardia, hypertension) severe weight loss, and chronic, widespread joint pain.

A link is being established now, in recent studies, between rising fasting glucose levels, which I have, systemic inflammation, and metabolic disorders. Is SIBO a common denominator? I wouldn’t be surprised, and indeed, this isn’t a trivial condition that should be left alone.

I did seek conventional medical treatment a few years ago for SIBO. My gastroenterologist wanted me to avoid a “breath test” (patients breathe into a tube and gases are analyzed) because the sugar solution taken prior to the test could have flared my ulcerative colitis. Her caution was sensible. Instead, we just treated for it.

I took a 10 day course of Rifaximin antibiotic, which stays in the gut rather than acting systemically. It worked for the first two days, which my doctor thought was confirmation enough of SIBO. I had a big surge of energy, clarity. It was fantastic. Then on day three the drug had no effect. This is not uncommon, and makes sense considering I’ve got a gut full of antibiotic resistant bacteria. Historically, herbals and fermented foods plus diet and fasting have been more beneficial.

SIBO is insidious – if you didn’t know what was wrong, you might think you were just aging badly, since most people tend to do better when younger. As time goes by, you lose the ability to fight it because your mind is too scattered to do focused self-treatment. Even cooking meals becomes difficult, especially because SIBO can lead to a loss of appetite. Starving it becomes the easy way out – symptoms are reduced when fasting – but any further loss of nutrition compromises an already weak immune system.

So despite my years of struggle with SIBO, including most all the symptoms listed above, I was confused when it flared the last time. This is because it came on strong with pain in my joints. I would wake in the late morning, feeling as if I’d never slept, and my whole body was throbbing. I figured this couldn’t be SIBO, it must have been something entirely different like arthritis. Instead, it was just the worst flare I’d ever experienced.

I started doing a lot of the old fixes, which are quite good: intermittent fasting (I cut out all food after 4pm) to starve the bacteria daily. I took peppermint oil with meals – a surprisingly good antifungal and antibacterial. I boosted my water consumption to about a gallon of distilled water daily, with trace minerals added. I went to 1 cup of coffee in the AM, cut out fibrous vegetables, I added Interfase Plus, to dissolve biofilms.

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The whole time I kept reading, and came across references to bovine-sourced lactoferrin, which is a substitute for the human lactoferrin babies get in breast milk. We adults also have it in our tears, and it can be found throughout the body. Lactoferrin is a bone-builder, a binder of iron (which pulls that fuel away from pathogenic bacteria), it’s also antiviral, used by some people to treat hepatitis C, and a potent antifungal. Throughout the literature, I read of its ability to harm pathogens while protecting, or even nurturing, healthy flora.

This makes lactoferrin a perfect choice for me, because as effective as peppermint oil, olive leaf, or berberine might be, these herbals also kill a lot of good bacteria. I am an avid sauerkraut and kefir-consumer, so I’m putting some flora back, but I don’t want to lose important lower gut microbes that fermented foods cannot replace.

Here’s perhaps the most exciting thing of all: lactoferrin’s interaction with lipopolysaccharide. Very encouraging, to say the least.

My results: it’s been a very exciting few days. The fatigue is still pretty bad, but it’s getting better. I’m finding my mind is clearer, my mood is brighter, and I can at least go for a walk and feel a bit stronger. A few days ago if I ventured out at all, I could hardly get down the block and back.

This makes me wonder how many of us with CFS/ME actually just have advanced SIBO. New science is beginning to understand the “gut-brain axis”, how the brain is linked to a “gut-brain”, our enteric nervous system, and CFS is a condition where that connection is obvious. In this thread “Lisa” did incredibly well with lactoferrin, for a time. For her, it seemed to provide energy as well as clearing the fog.

So far, I’ve had some toxic die-off symptoms (LPS!), but not as much as in the past when using antibiotics (such as the Rifaximin) for SIBO. My joint pain is not entirely gone, but it’s a lot better, same with my sleep patterns.

One very notable fact is I tend to feel more energetic while in motion than I do when I am laying down or sitting. I’ve heard this is a classic hypothyroid symptom, although not often documented, and back to the subject of LPS, I may have found a source of thyroid inflammation. Look for a lot more on this topic in future articles.

My plan from here forward is to reduce the broad spectrum herbal antimicrobials, be more strict about intermittent fasting, eat a lower fat diet with a few more simple carbs to reduce LPS (this is complex – kudos to Paul Jaminet), and continue on taking the lactoferrin. The brands I’m trying are Life Extension and Jarrow. The dose has varied. I started slowly, just two pills a day of Jarrow, but have since gone to 4 of each kind as of today.

I am also still a believer in supplemental iodine, but my dose is lower now, about 2.5mg a day, which is one drop of Lugol’s 2%, and I always take 200mcg a day of selenium to protect my thyroid. I have reduced iodine because if LPS is a factor in my hypothyroidism, I want to heal my SIBO first.

Lactoferrin to the rescue. Let’s see how this goes.

To be continued.

Iodine Protocol Update: Hooray!

It’s been about five months since my last iodine article, and I’m happy to say things are continuing to go well. It’s dose-dependent: I notice when I take too much time off I begin to feel setbacks, such as sinusitis and nasal congestion returning, increased tinnitus, brain fog, irritability, insomnia and fatigue.

When I get back on the protocol these issues resolve quickly. I notice my perennially stuffy nose opens (which feels more neurological than due to mucus), and my nasal passages are moist again. I never had this problem before being poisoned by Cipro and Levaquin antibiotics, and it’s great to know I can correct it!

sunrise

I also feel my sleep patterns regulating, my parasympathetic nervous system starts working, which means I can sweat again instead of being heat intolerant,  my heart rate drops from 100+ to around 68, gut motility improves, and my libido comes back, which is an odd sensation in my middle age, but absolutely welcomed.

I’ve been a proponent of low-dose iodine therapy from the start, and think “less is more” is the best approach to avoid thyroid inflammation, which can lead to both hypothyroid and hyperthyroid states. Iodine enthusiasts who suggest hurling one’s self into 50mg a day doses are being reckless, as I see it, especially because most people find their way to iodine when their bodies are struggling.

My sense of caution is from first-hand experience. If you’d like to read about it, the previous installments of my iodine adventures can be found here and here.

So why would I decide to start upping my daily dose? I want to explore iodine’s use for detoxification, and I don’t think low doses can accomplish this as quickly as I’d like.

Since November, 2014, I’ve been taking Lugol’s 2%, in water, and adding important co-supplements, such as selenium (300mcg a day) plus other common vitamins and minerals, like vitamin C, a B-complex, magnesium (a full list is here) – but rather than staying at my 1 drop a day (which supplies 2.5mg iodine) in recent months i’ve been boosting that, to first 3 drops, for a total of 7.5mg, then a few weeks later 15mg, and now, in recent days, as much as 25mg daily.

It feels really good, especially as pulses for a few days, rather than staying at a consistent level, but there’s no way I could have tolerated 25mg in the early days, it would have made me feel really toxic, which makes me wonder what I’ve accomplished over these six months.

A key to understanding this transformation is how fluoride (a key ingredient in Cipro and Levaquin) binds with iodine receptors throughout the body and impairs their role in thyroid function.  Perhaps mine are becoming liberated. I’m happy to say I’ve got recent blood work showing my thyroid function is normalizing, and in the past (after Cipro and Levaquin antibiotics) this wasn’t the case, I was hypothyroid.

Fatigue is still an issue for me, despite some improvements in this regard, and I suspect my thyroid is not fully healed, so getting a more detailed workup is in order, plus checking my adrenal function.

My next steps will be to get tested again for mercury, because a few years ago I had blood work and hair analysis showing these levels to be really high. Iodine has a reputation for removing mercury, and I’d like to also do a 24 hour urine test for fluoride, to establish my baseline and chart further progress. Check in to GHN in the days ahead for these updates.

Have you been taking iodine, in supplemental doses? Are you coping with fluoroquinolone damage, too?  What other strategies are helping? Tell us more in the comments section.

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Could Multiple Sclerosis Begin in the Gut?

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Joint Pain, From the Gut

Iodine – The Universal & Holistic Super Mineral

This article by Gabriel Cousens, MD, MD(H), DD is from 2012, but more relevant now than ever. Those of us on iodine protocols are learning about the importance of iodine, and how many of us are probably deficient – both from a dietary lack, and also a functional deficiency created when iodine receptors are blocked by fluoride, chlorine, and other toxins.

If you’ve got your own story to tell about healing with iodine, pro or con, let us know about it in GHN’s Hot Topics forum.  All you have to do is be logged in or registered, and hit the “join group” button, then get started.

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