Lufenuron: Healing Chronic Fatigue & More

A month or so ago I was feeling “okay” but not great. Ever since I was given Levaquin antibiotics in the ER for food poisoning, about 4 years ago, I’ve had CFS/ME, brain fog, tinnitus, POTS, SIBO, food intolerance, asthma, ulcerative colitis, sinus and skin issues, depression/anxiety, rising blood sugar and constipation.

Does this sound familiar to any of you? What’s the common thread?

I’ve had fungal overgrowth, inside and out, for years, made much worse by broad spectrum antibiotics. Doctors shuffle me out of their offices when I ask for Nystatin powder, or other prescription antifungals, despite having obvious plaques on my scalp, feet, face, chest and groin, plus sinus and lung irritations consistent with candidiasis.

I have tried my best to control it with diet and herbals, like olive leaf, pau d’arco, grapefruit seed extract and berberine. It’s a chronic infection, so I’m slowly feeling worse and worse. Recently, even downing healthy amounts of cultured veggies and homemade kefir (both are powerful probiotics) hasn’t been very effective.

Flash back to a month ago, all it took was one starchy lunch that fed candida and i got horribly ill. I had GERD, muscle spasms, insomnia, asthma. In the days that followed, I knew I needed to do something more drastic to get the upper hand. Colloidal silver was helpful, but not something I wanted to take longer term. I heard about Lufenuron in an online forum. Not for human use, this chitin-inhibitor dissolves flea eggs, and… the outer shell of candida. Mammals don’t have chitin, so it’s apparently safe for dogs, cats and (theoretically) people.

It’s typically given for the first week of every month, daily, with a high fat meal (so it will deposit in tissues and be slow-released, rather than quickly leaving via the GI tract), then for the remaining 3 weeks of each month it goes to work destroying fungal overgrowth.

gorilla

Yes, humans aren’t supposed to use it, but there’s nothing stopping anyone from treating their gorilla, so that’s what I set out to do. Curiously, ever since i gave my pet ape pure Lufenuron, we both started to feel much better.

This is my record of that adventure, which will be updated periodically:

Day 1: dosage was 2 grams, and by the middle of Day 2, a major burst of mental clarity occurred. By that evening, the ability to sleep deeply had returned, to the point of waking on Day 3 — after 10 hours with no dreams, out like a light — and muscles felt much less sore, plus joint pain had disappeared.

To reiterate: during a 7 day total treatment “loading” window, 2 grams were administered daily, with a high-fat meal.

By Days 4 and 5, die-off symptoms emerged, which is not surprising, and lasted until Day 12: diarrhea, blurred vision, fatigue, insomnia and body aches. The good news: no more constipation, but it took 10 days for die-off to subside, and detoxing continues.

Day 13: colon inflammation is gone, and a healthy, sometimes ravenous appetite has emerged. I’m finding I don’t have to manipulate my neck as much to relieve POTS symptoms. I also think my tinnitus is a little better. It comes and goes, but I have more moments of silence.

Today, Day 14, upon waking, the gorilla is quite spunky, feeling like a randy teenager (Lufenuron might replace Viagra), and in the afternoon, muscles unwind in a characteristic activation of the parasympathetic nervous system, as nap time beckons. The vagal nerve is working now, which is intriguing! Was candida to blame for it running amok? It’s amazing how long, hot showers are enjoyable again (for my monkey). Relaxation is happening; anxiety is disappearing. There’s no more being stuck in fight-or-flight mode.

Healing like this is emotional, but “joy” hasn’t returned yet. My gorilla is still waiting for that.

By the way, people should not treat their primate’s flea problem with pure Lufenuron unless they’ve consulted a veterinarian, and should never treat themselves using medication not approved for humans. In fact, any and all new treatments contemplated should first be discussed with a physician. Please see the disclaimer.

With that said, CFS symptoms are improving, POTS also, along with so much more. Go, monkey, go.

To be continued.

UPDATE: I tried Lufenuron three times, and while the first dose provided incredible relief, when I took it again one month later it was only half as effective as it had initially been, and by the third dose, another month after that, it barely had an impact on my fungal overgrowth at all. This was despite mixing it with herbals.

Luckily I learned something valuable from the experiment: it seemed my immune system was the problem, so I began looking for something that could boost my body’s innate ability to fight candida. That led me to iodine, and a potential connection between fluorquinolone antibiotics, like Cipro and Levaquin, and hypothyroidism. Here’s the first installment of my iodine protocol. You’ll find the second article here. So far the results have been really encouraging, and unlike Lufenuron, iodine is both inexpensive and subject to much greater testing in humans.

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Candida, SIBO and… Silver?

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 reputable sources saying most sinus issues are fungal. 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 go on a paleo diet, 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 also being anti-fungal. No wonder homemade sodium butyrate enemas have been so helpful for my ulcerative colitis flares. I believe butyrate could certainly help others with IBD, including Crohn’s disease. It may even play a role in protecting the upper gut (small intestine) from development of SIBO. 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 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 sign of SIBO returning, my breathing was restricted, sinuses were inflamed, and energy was in the tank.

I’d had had such luck with yogurt, in recent weeks, 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 “host manipulation“, 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.

Hyphal Form Candida

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 thread exploring a connection between SIBO and candida. 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 hyphal form for decades, we need to deal with it.

I am hosting hookworm right now, 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 agyria, 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 rib gets dislocated, and it happens most often when my gut is unhealthy. Lipopolysaccharide, 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 500 ppm (parts per million) colloidal silver in a pint of distilled water, which makes it about 33 ppm. This is a safe level, 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. Here’s a study 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 confirmed by several studies.

To deal with my lungs I used 30 ppm silver in a miniature glass spray bottle. 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 generator, 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 homemade kefir, raw sauerkraut. Silver is best used sparingly. I prefer adding healthy flora to my gut, not killing friend and foe alike. I also take Prescript Assist, VSL #3, and LifeStart powder now, as probiotics, plus an occasional butyrate 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: Colloidal Silver, Pro & Con, where all points of view are appreciated. And keep in mind all the usual caveats apply: ask your doctor before trying any new therapy.

Hookworm for Healing Prostatitis?

So seven weeks ago I did a 50 hookworm top-off dose, and I’m absolutely 100% allergy free right now: no asthma, no sneezing, and I’m also experiencing the characteristic lack of aches and pains I tend to enjoy when my hookworm are active and providing their benefits. This is now my third year of helminthic therapy, so my body is quite accustomed to it.

Side effects? Hardly any. A few weeks ago i had slightly increased mucus production in my nasal passages and sinuses, which is actually a sign of health for me, as this all disappeared when I got “floxed” with Levaquin antibiotics a few years ago. At that point my immune system was stunned. My nose always felt irritated, with a “tight” and “dry” sensation. Happily, I now have a very normal, unremarkable nose, and this means no more sinus headaches, either!

As far as gut function, I have a history of ulcerative colitis, and other than a brief flare that came on before my last dose of hookworm, I’ve been in total remission, for months. I was able to get rid of the flare using sodium butyrate enemas, and now it seems like my worms have it all under control.

Now, for something very interesting, indeed. In years past I’ve always noticed prostatitis is a problem for me as seasons change, particularly from Summer into Fall. Not so, this year, and perhaps this is also due to my hookworm! Why? My theory is prostatitis can be the result of seasonal allergies. In quite a few forums around the web I’ve noticed men wondering about a connection, and my experience could help to confirm it. I do hope in time hookworm will be put to use for this “off-label” condition, as I find it to be more beneficial than any other therapy I’ve tried!

It’s easiest for me to look at the prostatitis/allergy connection in terms of an inflammatory threshold. In past years, even when I was much younger, anything could be a potential trigger — too much coffee, alcohol, or spicy food, too much sitting, not enough exercise, infrequent sexual activity, general stress. Now, none of this matters. I just feel good.

I should add, I also include plenty of cultured foods in my diet, such as delicious homemade kefir, yogurt, raw sauerkraut, and probiotics in pill form. I am convinced this, too, helps prostatitis by improving the ecology of the colon. Considering the proximity of the colon to the bladder, and other male anatomy, it’s easy to see how a fungal overgrowth in the gut can lead to candida migrating into prostate tissues. Furthermore, it’s thought many of us are allergic to fungal pathogens, so once they invade tissues the immune system makes matters worse by mounting an ineffective inflammatory response.

Again, if hookworm tame the immune system, and a low-grade fungal infection is the trigger, it’s clear to me how helminthic therapy might play a role in easing prostatitis. I’ll have more to say about the impact of adding probiotic foods to my diet, and its effect on general inflammation, in a future post.

I’d appreciate hearing from you all in the comments section — of those doing helminthic therapy, is it helping to curb autoimmune response? And how many of you men out there have noticed if it helps with prostatitis? We self-experimenters are learning a lot about controlling inflammation, so much so that my doctors are really interested in updates — much of it gathered from you. Hopefully in time our knowledge can have an impact on mainstream medicine. Meanwhile, let’s keep up the good work!

Chronic Fatigue/POTS/IBD & the Gut-Neck Axis

“I worked with a chiropractor prior to my orthopedic neck surgery. As I described my FM/CFS symptoms, he said, “What did you do to your neck?” I mentioned I’d been in a serious car accident 10 years earlier, sustaining a whiplash injury. He said he had yet to meet a patient with CFS who didn’t have a history of neck trauma. He said there was a theory that any sort of injury to the cervical spinal column either released a component that led to the disease, or allowed one to enter the spinal fluid.”

 

The quote above was lifted from the comments section in a 2007 article on chronic fatigue, which is interesting in its own light, as it discusses a viral hypothesis for CFS/ME. Rather than going into this now, which is plausible to me based on the positive impact of FMT on CFS, considering a healthy microbiota is likely to be inherently anti-viral, I’d rather stick with a discussion of the biomechanical overlap between IBD/CFS-ME/POTS, and then relate that to gut ecology.

I suffer from CFS/ME in addition to ulcerative colitis, asthma, and other inflammatory conditions. I also, as many of you know, have a history of neck trauma, caused in a traffic accident years ago. For me, the neck injury acted as a trigger for most of my health issues, so I have recently suspected vagal nerve damage as a possible root problem. The VN mediates inflammation and immunity in the body, to a large extent, and controls heart rate/BP, hormonal output (adrenals, chief among them), organ function, including gut transport (suggesting constipation, GERD may be related to VN damage), so it’s easy to see where a wide range of symptoms could have this common thread.

I’ve dubbed it the “Gut-Neck Axis” because I’ve found healthy alterations to my gut flora are just as curative (or at the least, beneficial) as achieving proper alignment of my neck! Either will provide relief, whether it’s a glass of home-brewed kefir, a chiropractic adjustment, or a manipulation I can do on my own.

Why would this be? Does an adjustment of my neck release electrical “noise” in my central nervous system, a bottled up energy produced by pathogenic or translocated gut flora (SIBO), or is it simply taking pressure off my vagal nerve, which could allow it to engage more bandwidth in performing its tasks?

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My guess is both are true, because the neck is the physical fuse box between the brain and the enteric nervous system, the “gut brain”.

When hyperadrenergic POTS kicks in for me, my blood pressure and heart rate accelerate, I get obvious tinnitus, a stuffy nose, my gut stops moving, and I get very heat-intolerant. Much to my amazement, in recent days the use of a posture pump will stop all these symptoms, and quickly. Right away, I can feel peristalsis occurring, my nose opens up and I can feel my blood pressure dropping.

If I’m in the car and don’t have access to the device, often times just relaxing my neck, jutting my lower jaw forward a bit, and tilting my head back slightly will do the same. I’ve found it’s important to also try to elongate my neck as much as I can, by using muscles that extend it, whilst I simultaneously try to keep it limber, not stiff. At other times I get relief from just gently pushing in on my lower jaw (while it’s very relaxed), which seems to realign upper cervical vertebrae. There’s a zen to achieving this posture. It has taken practice, but luckily I get instant feedback when I’m doing it right, so I’ve made good progress.

By the way, it should be noted since we’re all different, I’m not recommending anyone try what works for me. This is not medical advice, and anyone reading along should consult their physician before attempting anything described herein.

The third leg of the stool, in this Axis, is active stress reduction. In any situation where I feel a high sympathetic state coming on, calming my mind, paying attention to breathing ( in for a count of 3, out for a count of 4) will act as a brake, and slow things down. For me, CFS/ME feels like a cardiovascular issue. I notice when hyperadrenergic POTS symptoms are flaring, I find it exhausting to stand; with my neck aligned properly I have much more energy.

One theory regarding a trigger for CFS is a vagal nerve infection, and I am not discounting this, but what if it’s also an impinged nerve, a transient impairment, that can be corrected with a spinal adjustment? It’s pretty clear to me my health issues have multiple avenues for healing, and there’s likely to be more than one root cause.

So to my broader point: in an attempt to simply feel as good as possible, I’ll continue to do each and every thing I’ve learned is having a positive impact on symptoms, whether it’s biomechanical or more related to gut flora. Since we know it’s a feedback loop, my theory is a neck injury can create a pro-inflammatory state in the gut that discourages the growth of vital gut flora. Stress can, too. Each of these, in turn, creates an inflamed gut that further discourages a healthy microbiome. It’s a vicious cycle. But by adding in cultured foods, probiotics, FMT, perhaps this reduces the electrical “noise” in the CNS, which makes mechanical manipulations less important.

I do know when I’ve done FMT a few times, it’s as if I’ve been seeing a chiropractor regularly. It’s all about relaxation, tilting over into a more parasympathetic-dominant mode, and a happy neck creates a happy gut, creates a happy brain. Furthermore, getting back to CFS, I notice FMT gives me a lot more energy. I can see where in the study cited above they may have had a much higher response rate with CFS/ME if the participants had simply done FMT for a longer period of time, say 6 to 8 weeks, rather than merely two to three days. I’d love to see another FMT study where participants were also given gentle chiropractic adjustments with an activator tool, massage therapy, and participated in guided meditation.

In the comments section I’d appreciate hearing from you. What are your own coping methods for cooling off the gut brain, staying in a more parasympathetic (restful/restorative/digesting) state? Also, if you have identified a neck-related trigger for IBD or CFS, which biomechanical approaches help the most? Have any of you had cervical spinal (neck) surgery? If so, what results have you had? I figure someone out there with IBD (ulcerative colitis or crohn’s) has had cervical spinal surgery and I’m very curious if this may have alleviated or improved the IBD.

 

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IBD and Vagal Nerve Issues: the Gut/Neck Axis?

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, 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, GERD, panic attacks/anxiety, and finally 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 (reverse of normal alignment) or wonderful, yet illusive, lordosis .

What’s the inflammation connection? The 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. What if we could do something similar with no equipment? 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 vagal 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 another woman via Facebook who had a skiing accident. She hurt her upper cervical spine, and has had POTS (standard, low blood pressure form) ever since.

This is certainly sad, especially given how little the allopathic doctors understand about hyperadrenergic POTS, or UC and other forms of IBD — typically they are good at treating acute symptoms — but if permanent neck trauma is indeed part of a multi-factoral 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 eating gut bugs (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! 

Hookworm working, feeling great!

Today I’m 10 1/2 weeks into a 75 hookworm dose. As far as I know, I had no worms remaining when I did that top off, because stool tests for ova were negative at the time, but I have had blood work done recently suggesting the new dose is alive and well. My EOS level is quite high, which is consistent with a parasitic infection.

I should add that for nearly everyone providers won’t allow a dose of 75 at once, but in my case I’ve demonstrated a very high tolerance, and have some health issues that make hosting for longer periods difficult, so my provider was willing to make a rare exception.

How am I feeling? Fantastic. Today Spring has sprung, the air is so loaded with pollen you can see it blowing in the wind. This year I can smell all sorts of flowers and other plants in the breeze, which is a nice change of pace. In previous allergy seasons when I was not hosting hookworm I was stuck inside, huddled in a dark room next to an air purifier, and shoveling down vitamin C, the only antihistamine I could tolerate. So the scent of Spring is a wonderful, new thing.

It’s a joy to have no asthma, no sinus trouble, and my mood is also really balanced. I have more energy, no more insomnia, my skin is clearing up (less rosacea), constipation (one of many side effects of levaquin) is gone, and I’m starting to gain some healthy weight: 6 ft tall, and 160 lbs. After being underweight for the last 10 years, this is a major milestone. I now weigh what I did before I got sick with ulcerative colitis. On the IBD front, I have not had a flare in a year or more, and the last one was brief, and quite mild.

Besides the hookworm protocol, I am drinking home-brewed kefir daily, and eating raw, organic sauerkraut a few days a week. I have adopted a lower-fat “mediterranean paleo” diet, designed to keep my lipid profile optimized. This seems to be encouraging good gut flora diversity, too.

Apologies for not updating this blog sooner. I’ve been busy working, holding down more than one job, and at times working 12 days straight. Anyone who has followed my blog from the start knows how incredible this is. I feel “normal” again, but in some ways I feel better than I have in about 15 years. Seriously!

Healing from POTS

How did I get here? My symptoms of a stuffy nose and breathing trouble began after a motorcycle accident 22 years ago. At the time, I was more concerned about the rest of my body than my neck. It was stiff and sore for a few weeks, but I shook it off, and moved forward in life. About a month after the accident I began getting asthma attacks that would start with a stuffy nose. Tachycardia was also an issue, cropping up when I was exposed to allergens like house dust. Too bad some doctor back then didn’t order imaging studies of my neck. They probably would have seen the loss of normal curvature (lordosis) of my cervical spine, a condition known as “kyphosis”, which can be caused by traumatic injury.

I saw a neurosurgeon last week, and he felt surgery to open up my cervical spinal channel would improve my symptoms. He couldn’t promise anything — a favorable outcome, reduction or elimination of any specific symptoms, and he cautioned I might come out of the surgery feeling worse. “I can’t predict the future”, he said more than once. He suggested gentle, focused chiropractic, and neck traction, as things to try instead of surgery. Overall, his was an honest assessment, and one I could appreciate. But I’m not ready for someone to cut into my neck yet. And this particular surgeon seemed to know nothing about POTS. I described my symptoms and he referred to them as “vague” or “diffused”. To anyone familiar with dysautonomia, I would consider my description as classic, and typical, of autonomic nerve dysfunction, orthostatic intolerance, but these are not common diagnoses, unfortunately.

So I’m trying to tackle my health issues on a limited budget, and get the most impact I can for the effort. Neurofeedback worked well to deal with the background anxiety of illness. All these symptoms take their toll, and I felt these sessions were soothing me, but the effects only lasted a few days, and they were not cheap.

In the last week I’ve seen a new chiropractor who uses the “activator” method. It’s a precision hand tool that delivers a measured, consistent pulse of pressure to the spine, in a focused, gentle way. Most of the time you barely feel the adjustment, but it does work. I’ve noticed the effect bloom over the course of three or 4 days after. And this chiropractor is working in a very methodical way, starting from my hips and low back, paying attention to leg length, and then testing various neurological responses to find subluxations all the way up to my cervical spine. After 3 visits I can say i’m feeling a noticeable improvement, and I plan to continue treatment as long as I can. Thinking back over the development of my health issues, chiropractic has been one of the most helpful, but also has been damaging, when the wrong approach was applied at the wrong time. I want to stick with rehabilitating my cervical spine as much as possible, since it seems to be the source of so many issues.

POTS, be it hyperadrenergic like I seem to have (diagnosis pending), or the more conventional hypotension form, can also have an autoimmune component. The last few blood pressure spikes I’ve had didn’t seem overly related to head position, neck movement, etc. Sometimes my neck and head just starts to get hot, and I can feel my pulse and BP rising, usually after exercise or eating a meal. Both activities can release histamines, which in turn can activate mast cells. MCAD, or mast cell activation disorder, is a theoretical cause of POTS according to some researchers. They’ve found for certain patients an antihistamine will control symptoms just as well as more conventional approaches like beta blockers or blood pressure medications.

Diet is something I’ve been tinkering with for about a decade, and it has consistently yielded good results. Not necessarily linear progress, but the overall trend has been favorable. Two days ago I decided to give up dairy products altogether, and this was after a dairy holiday of two days reduced or eliminated many of my symptoms. Things like tinnitus — now nearly gone after a weekend of being dairy free. The fullness in my ears, congestion in my sinuses and nasal passages, slowly getting better now. My overall mood seems more stable, less anxious, less brain fog and fatigue. This blogger here has a very interesting theory about casein allergy and how improperly digested casein can affect neurotransmitters, even months after stopping dairy consumption. Basically, they are suggesting casein peptides can “lock up” certain receptors in the brain and create a wide range of neurological symptoms, including insomnia.

Sleep, for me, is the final frontier. Just as I thought I was sorting it out, last night I had another episode where I went past the 11pm tipping point, and was soon staring at a clock reading 1:45AM, with pulse pounding. In moments like this, I’ve decided to just take half a Klonopin, which for me is half the lowest .5MG dose, and go to sleep. It works. And sleep is too precious to miss, especially since going without for a night makes the POTS symptoms much worse.

The ultimate goal, of course, is to sleep well without any pharmaceutical aid whatsoever. I’m hoping with diet, chiropractic, and things like consistent exercise and meditation, I can achieve this in the near future.

I always seem to wrap up with a thought about the worms. My helminthic therapy has been paused by the use of Levaquin antibiotic, but the hookworm and whipworm should be back “online”, laying their eggs, in another 6 to 7 weeks (October 15th). I’m hoping by that time I’ll start to experience their longer term benefits, which could include a reduction of most, if not all, allergic symptoms. Can these worms “cure” my POTS? Well, during my bounce back in April, 2011, all my various aches and pains disappeared. I’d settle for feeling a fraction of that relief now, and have high hopes helminthic therapy will compliment all the other measures I’m taking.

Cervical Spinal Stenosis?

We shall see, but (ulcerative colitis and some food allergies aside) I think the true cause of years of my health problems is about to be revealed. I go to my doc  in a few days and will get an MRI done to assess what’s going on with my neck. At this point it appears the most intense “allergic reactions” I thought I was having to the HT were actually nerve pain and respiratory symptoms emanating from my cervical (upper) spine. Wearing a foam neck support for a few days has helped a lot, especially as a diagnostic tool. I was intrigued to read there even seems to be a connection between TMJ and cervical spine injury.

My chiropractor suggested I do some imaging studies, and thought a narrowing of the channel for the spinal cord in the my neck, or “cervical spinal stenosis”, might be the culprit: nerve pain in extremities, and muscle weakness, plus low blood sugar episodes, tinnitus, anxiety, and poor muscle coordination at times. Even my “exercise intolerance” may be related, since the movement of walking, and especially running, aggravates this fragile part of the body. In my case, a few minutes of brisk walking was enough to trigger a very stuffy nose, and an asthma-like attack, which would make my heart race. A cold sweat often followed.

Vitamin C worked as a powerful medicine for this “worm flu” I thought I was having, due to its anti-inflammatory qualities. I can confirm it still works, and for the nerve issues, because when the pain and other symptoms are at their worst, the same moderately high doses of vitamin C (five to ten 1,000 MG tablets) clear it up quickly.

From what I can gather now, the only side effects of mine that appear related to the helminthic therapy is some diarrhea (with attendant dehydration), and fatigue. Neither appears totally resolved yet, at this, day 69, but it’s much improved from a month ago.

If I’m lucky, maybe the HT will help reduce inflammation in my neck on an ongoing basis. During my bounce, in week one post-hookworm and whipworm inoculation, I felt incredibly good, and was quite active. So let’s go, worms. Onward and upward!

TMJ, by the way!

My helminth express seems to be off the rails for a moment. Allergies are returning, anxiety is back, so are restricted airways, both in my chest and head. My neti pot offers scant relief for this strange congestion, as there appears to be no mucous, only inflamed tissues. You don’t realize how horrid asthma is until it’s been bannished for 60 days, and then suddenly returns.

Since it’s no fun to go from feeling good and carefree to fairly awful, I’ve spent the last few days trying to figure this out. Why did I suddenly start having blood sugar issues again? Was it that one fateful night I had a tiny sip of scotch (no irony, it was only half a shot) with friends, and stayed up way too late? Were my adrenals already hanging by a thread, and that slight nudge was enough to upset the whole apple cart?

Or did this frustrating turn of events happen when my jaw slipped out of joint? Seriously! TMJ,  or temporomandibular joint disorder has cropped up occasionally in the past. It’s annoying because it’s impossible to chew anything without pain, and then there’s the fear of further dislocating the joint. It was about a week ago when my overall health began to backslide, and the TMJ happened first. Is there a connection? Quite possibly, and it’s a strange one.

Apparently, trauma to the nerve near this joint can stimulate the release of “substance P“, which doesn’t get recycled in the body, and has endocryne-like properties. There seems to be no limit to the odd sensations and behaviors provoked by “substance P”, according to one article i read, including itchy skin and an urge to swear. $%@#!! No wonder. What resonates for me in the reading I did tonight are symptoms of tinnitus, and autoimmune issues — specifically, lots of pain and histamines, with acute inflammation. And let’s not forget anxiety and insomnia… or asthma, for that matter.

So is substance P actually the culprit, and is it capable of upstaging the helminth harmony? Or is this combination of factors, like adrenal fatigue from years of prednisone use, inattention to an optimal diet, lack of sleep from too much (half-caf half-decaf!) coffee, and stress from work — did these factors collectively take me off the HT track? Probably “all of the above” and it’s going to be a slow, steady road back. But I would love to think “Hey, man, it wasn’t me — it was the substance P.”

Day 53 — Stability.

Today offered the strongest clues yet that the side effects phase is beginning to resolve. I woke after a fairly sound sleep with decent energy, and only a little of the brain fog and dehydration I’ve come to associate with “worm flu”. My appetite is slowly beginning to emerge again, and I’m able to tolerate the fairly narrow range of foods in my current diet quite well. I’ll test myself with more choices later, once I know I’m not reacting allergically to the helminths anymore.

Exercise is a key barometer — I continue to not only tolerate it, but I am starting to thrive on its effects. Curiously, it really seems to mediate my body’s reaction to the HT. I can feel the strength returning to my legs, as I push myself along at a good clip, searching for fatigue that never seems to come. My breathing is consistently clear and unaffected by temperature, humidity, airborne allergens, etc. By all measures my asthma and upper respiratory complaints are gone.

And it’s also time to celebrate 3 consecutive days of no worm-induced GI disturbances. My gut no longer feels tender, and I’ve started to gain back the weight I lost due to several weeks of compromised digestion — 5 lbs in about 6 days. So I’m now 149 lbs, 11 under my ideal target weight. That’s significant!

Tinnitus is only audible these days when I’m having a reaction to the HT, which came again this afternoon. I was able to deal with the symptoms by taking five 1,000mg tablets of vitamin C. That’s half of what I’ve used in the past, and the attack only lasted 90 minutes — about half the duration of a typical episode. This is one more indication my body  is beginning to submit to the iron will of the worms. The total absence of tinnitus throughout most of the day suggests my adrenal function is normalizing.

I’ll be quite happy if the trend continues, with modest improvement, for the foreseeable future. Obviously, I’d like to start feeling some of the more euphoric moments like I did during the initial “bounce”, post-inoculation, but as my sleep patterns rebalance (I still feel a touch of insomnia), and my diet becomes more varied, I would expect the benefits to start ramping, perhaps even with some synergy.

Necator Americanus & Trichuris Trichiura

So I’ve got 55 hookworms now, Necator Americanus to be exact, and 500 Trichuris Trichiura whipworms. Together, they brought about a growing and intense well being, starting a day or so after I was inoculated. I could breathe through my nose, fully, for the first time in many years. I could smell the chill in the morning spring air as I made my way outside, amidst a torrent of tree-fluff allergens that would have had me gagging with asthma, and running for HEPA-filtered air, just days earlier.

Shortly thereafter, the skin on this 40-something’s face was becoming soft and smooth, not rough and inflamed, as it has been for so long. What a time machine. I ran my fingers through my hair, which even felt a bit softer, too, and noticed the seborrheic dermatitis was easing. The scaly patches that had dogged me since my late teens were giving way to a normal scalp, the redness around my mouth and nose was becoming clear and… normal. Never before has “normal” been such a wonderful word.

I tried wheat, and sugar, even beer, and tolerated all of it. Merely days ago this forbidden menu might have sent me to the ER with a flare of ulcerative colitis. Yes, it can be dangerous to throw caution to the wind, and make such drastic changes, so I soon backed off the accelerator, and stuck with my low carb diet. But it was an incredible triumph to have a bread pudding… and live to type about it.

This “bounce” lasted for five glorious days. Then, as quickly as it came, it went. Such euphoria is a normal reaction to helminthic therapy, as I’ve come to understand, for a small and lucky subset. Some who do “HT” never bounce at all, so in this sense I felt doubly fortunate: first, to be successfully hosting them, and second, to have had such a strong initial response as they entered my bloodstream.

Inoculation day was April 25, 2011. I took two hookworm doses over two days — 35, and then 20 more. About 15 minutes after application, a “ground itch” developed at their entry site on my arm, which was quite mild. I also drank a tiny vial of 500 Trichuris Trichiura human whipworm ova on day one, which were suspended in saline solution. Apart from the concept, their entrance was utterly uneventful. *Gulp* Bon appetit.

 

 

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