FUCK You All Mafakerz !
Since my last post here, many months ago, I got short term improvement from B-12 shots, but my serum levels were sky high and my doctor suggested I stop the injections. After an initial bounce I crashed, and began to have widespread inflammatory and neuroinflammatory issues. He theorized this may have been triggered by saturation with B-12. My serum B-6 was also quite high, despite never supplementing it.
A methylmalonic acid test was elevated, so after being off it for a few months, I continued to take 2,500 mcg oral B-12 and requested referral to a specialist who could check for genetic issues with methylation, but as my neck and back became more inflamed, and cognitive problems worsened, I was instead sent to a neurologist, who did a full workup: brain MRI, a soft-tissue MRA, hearing tests due to increasing tinnitus, a carotid artery test, and an EEG.
Other than a few white matter brain lesions (no change since a 2008 MRI) which may be congenital, these new tests were inconclusive. While I do have some degenerative changes to my cervical spine, autonomic dysfunction was the neurologist’s primary diagnosis. At this point, my symptoms were growing – you can read a list of them here.
A few weeks later, I saw a neurosurgeon and explained how pressing in various places on my neck, the base of my skull, and near the mastoid process behind my right ear, could often improve my autonomic issues. He pointed out a Chiari Malformation on my brain MRI but said “we don’t operate to fix dysautonomia”, which was yet another blind alley. I’ve yet to see an autonomic specialist for non-surgical treatment of this.
Flushing, at first just a red glow on my face, then eventually from near head to toe, has also been happening for about 14 months. My doctor tested for Carcinoid, and so far results don’t indicate it, which is a relief. Instead this may be related to a mast cell disorder. I’ve learned certain kinds of flushing, even the rosacea which I have, can be caused by neurological problems.
What’s the root cause? It’s likely multifactoral, but nerve damage from repeated doses of fluoroquinolone antibiotics over the years, like Cipro and Levaquin, likely plays a huge role. It was after a final dose of Levaquin in 2008 that I developed symptoms of hyperadrenergic POTS – primarily a vagus nerve malfunction – which triggers heat intolerance, trouble handling physical and emotional stress, and orthostatic intolerance.
However, these antibiotics did more than nerve damage, they wrecked my gut flora, and POTS is now thought to be autoimmune.
The best I’ve felt in recent years was while I hosted hookworm (small therapeutic doses) and did fecal transplants. Both of these protocols may boost vagus nerve tone, by lowering inflammation in the gut and boosting signaling from the enteric nervous system back to the brain, the “rest and digest” parasympathetic, which works opposite of “fight or flight” sympathetic.
My doctor suggested I try probiotics and hookworm again because he noted they seemed to help me, so I’ve been taking VSL#3 daily, plus Miyarisan tablets, which contain c. butyricum, and 15 weeks ago I did a dose of 50 necator americanus. While the initial side effects of helminthic therapy were rough, with spikes noted in blood work for eosinophils, I’m now feeling more benefits than allergic response, including no more asthma, healthier sinuses, and a big improvement of ulcerative colitis.
Concurrent with this, I remembered how good I felt one Summer when sunbathing for 15 minutes a day. I’ve had chronically low vitamin D and low testosterone. Sun exposure boosts both. I started laying out at noon each day a few months ago and it has been a great mood lifter. I also find I have better sleep quality when I get my daily 15 minutes. To discuss light therapy, its effect on mood, hormonal production and balancing sleep/wake cycles, join us here on Facebook.
I wanted to cover all the bases, and since sinusitis has been an ongoing problem for me, too, with green mucus indicative of staph colonization, I’ve begun daily rinses, which you can read about here. Two weeks later the mucus is thinning and has no color. I credit both the hookworm treatment and rinses to this recovery. Reducing sinus inflammation has improved anxiety, and my sleep is deeper. There’s a theory sinus inflammation from gram negative sinus flora can generate lipopolysaccharide (a potent inflammatory molecule) which in turn triggers brain inflammation.
Waking in the night gasping for air has been a problem during these last few months, and while I was scheduled for a sleep study I noticed a sudden improvement after a few days of sunbathing. There’s a vitamin D and sleep apnea correlation, mainly with regard to metabolic activity, so it’s possible Sun is good medicine for it. While I still have some brain fog, my mind feels sharper while sunbathing and I’m no longer waking at night. Since obstruction of upper airways can also contribute to apnea, sinus rinses are likely helping, too.
I’ve also been to see an oral surgeon after my dentist thought I could have dental infections contributing to fatigue and cognitive problems, but an oral surgeon did a panoramic x ray and said it looked fine. He noted sinus inflammation and recommended I keep doing my daily rinses.
I feel fortunate testing was able to rule out a lot, but if you see a pattern here, it’s that each protocol has helped a little – yet nothing has totally solved – what first appeared to be symptoms of low B-12. Now, just in the last month, I’m pretty sure I’ve figured out a key factor, and it may be a different deficiency, with very similar presentation.
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.
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.
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.
A brief bit of background: my mother took lots of antibiotics, from the 1950s onward, and was on Tetracyline when pregnant. I got my gut flora from her, as anyone would, but was born prematurely and spent 2 months in an isolette. This means I acquired the rest of my microbiome in a hospital, before heading home. I think it’s safe to say I’ve have had yeast issues for most of my life. My entire family did.
The standard medical attitude about candida continues to be “it doesn’t exist in anyone unless they are immune compromised”. My gut flora was damaged pre-birth, then I had a family doctor who prescribed antibiotics for a simple cough, or the sniffles, I’ve since been hit with Cipro and Levaquin (fluoroquinolone antibiotics) at least a dozen times, so from a modern understanding of gut-immune function, I am immune-compromised!
I got toenail fungus at an early age, developed sinus trouble (more antibiotics!) and have since read . Candida? Maybe so, but the type of fungus is moot. Next I got asthma, seasonal allergies, then ulcerative colitis, then severe food intolerance. At no point along that path did any doctor say I needed to heal my microbiome, or , so if they didn’t understood something so basic, I can’t put much stock in their wholesale dismissal of candida overgrowth.
Here’s the good part — I’ve been getting better ever since I started paying attention to gut health. It’s simple. Lower carb is healing — sugar is bad. Probiotic foods are a “yes” — antibiotics are an emphatic “no” (unless utterly essential). It’s been a wonderful road back for me, with every single health condition.
I’ve recently discovered antibiotics very likely destroyed the fragile, butyrate-producing bacteria in my gut, and butyrate heals inflammation — while . No wonder homemade sodium butyrate enemas . I believe butyrate could certainly help others with IBD, including . It may even play a role in protecting the upper gut (small intestine) from development of . Speaking of…
Early this week, a Monday, I’d just started a new job. I didn’t have time to fix my own lunch from home, so I had to fend for myself in the usual higher-carb, sugary restaurants. I found a beef roast with sides. The meat portion was tiny, covered with a sweet gravy. Roasted potatoes and green beans rounded it out, but that same sauce was all over the veggies. I 翻墙 was so hungry I ate every potato. Normally only eat about 3 oz of them a day. I’d been in good shape, gut-wise, for so long, I could afford to cheat, right? Wrong! By morning, I could tell I had yeast overgrowth. My gut had zero peristalsis, I had bad tinnitus, which for me is usually a , my breathing was restricted, sinuses were inflamed, and energy was in the tank.
I’d had had such , I decided to eat two pints, the following day at work. Apparently the candida had done such a job slowing down my gut, the yogurt just sat there. Candida has been slowly digesting us since day one. I believe it uses ““, which is what many successful parasites do. People with yeast overgrowth often crave sweets and alcohol. I know I have in the past, and I didn’t lose that until I started removing yeast from my body.
It makes sense: if candida creates sweet tooths to feed itself, why wouldn’t it also emit chemicals to slow down gut transport, to more effectively eat our food? This may explain why so many of us are underweight, or constipated, and could be a strong hypothesis for alcoholism. Here’s a very interesting . Normally benign, its invasive (hyphal) form is thought to just be a symptom of dysbiosis. A healthy array of commensal bacteria should curb overgrowth. However, for those who’ve had for decades, we need to deal with it.
, for food intolerance, asthma, IBD, so I can’t take oregano oil, olive leaf, berberine, even peppermint, without killing them. Colloidal silver is an antibiotic, but it will just stun them for a few days. Numerous articles discuss a rare condition called , where people who consumed massive amounts of silver turned their skin a bluish tint. I have taken only 3 courses, a few weeks at a time, in the last 4 years. I’m not worried about changing color!
So back to the problem at hand, by the end of day 2 my entire back was sore, where it was nearly impossible to walk. I have a specific pull-pattern where one , and it happens most often when my gut is unhealthy. a bacterial endotoxin, may be the root of this inflammation. That night, I simply couldn’t find any position to lie in, and insomnia made everything worse. I spiked a fever from the SIBO, which is rare for me, and my lungs felt like bronchitis was developing.
Most people would have gone to the doctor at this point, and been prescribed antibiotics, but I don’t tolerate most of them, and would rather use an antimicrobial that kills both bacteria and yeast.
The morning of day 3, I still had a fever, and started with 1 ounce of in a pint of distilled water, which makes it about 33 ppm. This is a , in my opinion, especially since I take it very rarely. It has had a long history as an antibiotic before the modern pharma-industry developed conventional antibiotics. showing silver’s effectiveness against antibiotic-resistant strains. I’ve read other sources claiming it “smothers” both good and bad bugs. Its effect on candida is .
To deal with my lungs I used in a . 5 puffs every two hours. So how did it all go? Interestingly, the oral silver seemed to get my gut moving, and my stools were soft but formed. I’m thinking this relates to a lower yeast population in the gut. A few hours after starting inhalation, my lungs were clear, the fever broke, and I’m still feeling pretty good. I’ve read articles where doctors used CS in a nebulizer to treat people with AIDS-related lung infections, so this seems like a solid approach. It protects weak patients like me (who are immune compromised) from gut-damaging systemic antibiotics.
What’s my takeaway? Buying silver is expensive, and I normally make my own, using a cheap , that tests out about 17 ppm. The cost of home-brewed is pennies per pint. I plan to use the silver orally and as a spray mist only if needed, for the next few days, then I’ll go back to cultured foods like , Silver is best used sparingly. I prefer adding healthy flora to my gut, not killing friend and foe alike. I also take , , and powder now, as probiotics, plus an occasional enema. This is what works, and I’ll keep it up, but perhaps the moral to this story is, the next time I’m late for work, I’ll stop and cook my own, sugar-free, lower-carb lunch!
PS: for those interested in learning more about colloidal silver, here’s a great group on Facebook: , where all points of view are appreciated. And keep in mind all the usual caveats apply: ask your doctor before trying any new therapy.
Is it possible some of us with IBD also have an underlying neck injury, which drives gut inflammation?
The average human’s head is about the weight of a bowling ball, so it’s not surprising the neck can experience trauma due to an acute injury, or chronic misalignment through smart phone use (text-neck!) , poor posture on the job, inactivity, etc.
For me, inflammatory conditions began with antibiotic use, but they got MUCH WORSE after a neck injury, sustained in a traffic accident, several years ago. Initial symptoms were a stuffy, blocked nose without congestion, then asthma, GERD, sinusitis, tinnitus, TMJ, constipation, IBS, and a few years later ulcerative colitis.
UC lead to inactivity, more time spent in front of a computer, degenerative changes in my neck, throw in a dose of Levaquin for food poisoning, then SIBO, food intolerances, hyperadrenergic POTS, heart palpitations, even worse GERD, panic attacks/anxiety, and finally fibromyalgia-like pain and chronic fatigue.
I’ve had quite a few breakthroughs with health in the last few years, but the most profound occurred about a week ago when I realized many of these symptoms I’ve had for years (while directly linked to antibiotics use) are also mediated by my posture, specifically, if my neck is in an unhealthy kyphotic curvature (the reverse of a normal alignment, called lordosis) .
What’s the inflammation connection? The vagus (also called ‘vagal’) nerve runs throughout the body, getting its name “the wanderer” from the widespread path it travels, but it threads its way through a narrow channel in the cervical spine, such that compression of soft tissues between the upper cervical vertebrae can impair a lot of vagal function. This is my layperson’s view. Let’s see if our experience bears this out.
Given that the “fight or flight” response includes a clenching of neck muscles, in preparation for fleeing, is it possible this reduction of parasympathetic response (relaxation) is partially a built-in biomechanical feature of our bodies? If so, chronic stress, with its attendant tightening of that upper cervical spine, may be a vicious cycle — one that we can fairly easily monitor and turn around!
In a previous post I mentioned the posture pump I’ve been using. It’s fairly inexpensive, and definitely effective, but also impractical for anyone out and about in the world. For a cheaper, more portable option, try a NeckBone Pillow.
But what if we could do something similar with no equipment at all? Enter the “Alexander Technique“.
I’m warning you: this practice is so simple, you may wonder if you’re doing much at all, but when performed properly, you’ll notice a big difference. For some, this perfecting of posture and movement may be all you’ll need.
I have developed the habit, in just a few short days, of “sitting tall” in my car, as I’m driving. I tilt my head back ever so slightly, so that my chin is jutting forward. Lordosis! I can feel my nasal passages opening, my sinuses draining. I also notice my blood pressure dropping, as pressure (I assume) is taken off my vagus nerve.
Furthermore, when I adopt this posture throughout the day, I notice the “heat” that fills my entire lower abdomen, and gives rise to gut inflammation, mucus in stools, dull pain — this totally goes away. Hmmm…
I know I’m not the only person who experienced the sudden onset of hyperadrenergic POTS after a neck injury. A cardiologist I consulted a few years ago about my POTS symptoms mentioned one hyperadrenergic patient of his who was a perfectly healthy woman until she got whiplash in a car crash. I’m in touch with someone else on Facebook who had a skiing accident. She hurt her upper cervical spine, and has had POTS (the low blood pressure type) ever since.
This is certainly sad, especially given how little the allopathic doctors understand about hyperadrenergic POTS, UC or other forms of IBD — typically they are good at treating acute symptoms — but if permanent neck trauma is indeed part of a range of inflammatory triggers, we can at least try to heal vagal nerve function from the gut side of the equation.
Our enteric nervous system is a feedback loop, so the Gut/Brain/(Neck?) Axis works in reverse, and if we have mechanical impairment “upstairs”, boosting gut flora signaling via the vagal nerve, from gut to brain, may compensate for the neurological impairment in some people. I’ve been tinkering a lot with gut flora (in yogurt, sauerkraut, my own homemade kefir and probiotics) that may promote parasympathetic (relax and digest) activity. More on that in a future post.
Does anyone else have a history of neck injury or strain that could explain more global issues? If so, I’d appreciate hearing from you in the comments section.
EDIT: since writing this article not long ago, I’ve spoken to huge numbers of IBD sufferers who had a neck injury immediately preceding the onset of their illness. I’d appreciate your feedback. If you’ve had a similar experience and would like me to include your story in a future post, send me an email via the contact form. Thanks!
I am still enjoying delicious Vivonex (heavy sarcasm) for most of my nutrition, but tried adding a few veggies tonight: purple cabbage, cauliflower, and broccoli, steamed in a pot together.
Added a whiff of olive oil and some sea salt.
Aced it. No reactions!
This is pretty major progress for me. Last October any one of those foods would have had me feeling toxic, especially the olive oil and broccoli, due to the salicylates.
So based on what I’ve read about salicylate intolerance, my phase II liver detox is functioning a bit better 外汇交易平台 now, and my gut is in pretty good shape, too. More regular elimination probably takes a bit of the burden off the liver.
Good job, hookworms. 🙂
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