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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More Whipworm for Ulcerative Colitis Flare

My gut has been doing incredibly well ever since starting helminthic therapy back in late April, 2011. On August 8th I had to take Levaquin antibiotics for 7 days, and this “stunned” my worms enough that they no longer were providing anti-inflammatory benefits. Three days ago I noticed the first hint of an ulcerative colitis flare: a little mucous, some heat in my left abdomen around the descending colon. Sure enough, a day later I had a slight bit of blood on the TP. Those who suffer from UC know all about this. It’s when you start trying to decide how best to get rid of the inflammation.

In my case, I’ve had good luck with dietary changes, but only for maintenance. The “big gun” of a decadron IV in the hospital works, as does Imuran, but each of these meds have horrid side effects. And with “dysautonomia” now affecting me, who knows how I would react, even if taking a small dose of prednisone.

So I started thinking about that 1500 whipworm top off dose in my fridge. Trichiura Trichuris to my rescue? I downed all 1500 in one gulp. If my immune system needs a “suitable target” for a distraction, I’ve certainly given it that. Speaking of, over the last 10 years, the luckiest I ever got was catching a cold of some sort while I was flaring. It was enough to take the immune attack off my gut, and focus it on the “bug” instead. Here it is almost week 20 after my first inoculation, and I’m aiming for a similar response with this 2nd dose of helminthic therapy.

In an ideal world I would have had a spare vial of Necator Americanus hookworm, and inoculated with those instead. I think my body tends to get along with them a bit better than the TT whipworm, but I have no solid proof of that, only a hunch. Anyway, so it goes — we work with what we’ve got. Now I’m pondering the coming wave of side effects. Since my body already knows these critters, having taken 500 of them in late April, I don’t anticipate the same intense reaction, but time will tell.

I’m hoping this latest batch of “old friends” keeps me healthy until the initial round (55 hookworm and 500 whipworm) perk up from the antibiotics. It usually takes about 6 to 8 weeks, so they should all be “online” and laying their eggs again by October 15th. Meanwhile, goooo, worms. 🙂

Neurofeedback Helps!

I had my second session with the LENS neurofeedback system yesterday and my subjective opinion is it’s really helping, all the way around. I feel more energetic, my mind is sharper, and I’m more at ease. I’m not quite back to where I was between weeks 7 and 9 of my worm therapy, but if the trend continues, I’ll be there.

One bump in the road was a 7 day course of the antibiotic Levaquin. Some who take it suffer from anxiety and insomnia, and this was me. Fortunately the infection resolved early, and I am now off it, so I can begin the process of rebuilding my gut flora. I’m taking three types of probiotics, several times a day, and eating lots of soft-cooked vegetables to bulk up my stool and combat any yeast overgrowth. I’m also taking digestive enzymes to aid absorption of vitamins and minerals, plus much-needed fats, from my food. Vitamin B complex, a mineral complex, and 5K units of vitamin D3 round out my daily regimen.

Coffee has been forbidden now, since the episodes of increased blood pressure, which are pleasantly absent since the Levaquin was stopped two days ago. I don’t miss caffeine at all, even decaf coffee, so chances are I will bid it farewell, at least for the foreseeable future. Sugar and any complex carbs are also off the menu, and have been for years. Many who do worm therapy discover they can re-indulge in these foods once they are getting longer term benefits, but I’m so keen on healing up I may never even test those waters.

Symptoms of POTS have been a real eye-opener for me, and strong motivation to get back to what works. My primary focus now is to reprogram my circadian rhythm, to get regular, restful sleep, and continue repairing my nervous system as best I can. Progress has been made on that front already, considering I now have no trouble typing or walking, and the paresthesias in my face, forehead, hands and feet are now practically gone. I want to make sure systemic candida is kept to a minimum, too, as it may play a role in autoimmune reactions related to POTS/dysautonomia, in my opinion. Anything that stresses the immune system, be gone!

As for my hookworms and whipworms, I’m hoping the antibiotics I took for a week did them no harm. An egg count, in another month or so, is probably the best way I have to confirm they’re still with me. Chances are they survived just fine, as I can find no reports of mass die-offs when helminths encounter those types of medications.

Day 28 — Tug-O-Worm.

I hadn’t planned to post again until events warranted it, but since things are changing rapidly, here goes.

Today, like yesterday, I woke up feeling fairly good and as the afternoon approached had another reaction. It was a bit more muted this time, eventually coming on strong, then suddenly it would reverse and I would feel incredibly good. This push and pull continued for a while: body and mind, oscillating between harmony and dischord. Sleepy and relaxed, breathing freely, then I’d get hit with a stuffy nose and general unease.

At times the troughs were bad enough I decided to take more vitamin C, but there was no need for predinsone today, and for that I’m very thankful. My gut has been feeling really good most of the time, too, so if all goes according to plan, I hope to ditch the pills and lean on the worms, from here on out.

So what’s happening, why the back and forth? All I can think is the helminths are training my immune system to not harm them, by reacting when I react, and sending out the good vibes to calm everything down. It may sound a bit strange, but I’m really enjoying this process.

In moments I get glimpses of how I felt during the initial 5 day “bounce”, so maybe, just maybe, I can recapture that as my longer term benefit. Fingers crossed.