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.

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.

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.

Hyperadrenergic Postural Orthostatic Tachycardia Syndrome

What a mouthful. I’ll say it again: Hyperadrenergic POTS. According to one cardiologist I spoke with recently, who sees a lot of similar cases, this is what I may have. Some blood work was done 3 days ago and I am heading off to see another cardiologist as soon as my health plan authorizes it. This feels like progress. My primary goal now is to control the blood pressure spikes, which tend to happen most often when I am under physical or emotional stress.

I sense I’ve had “hyper POTS” most of my life, and it has flared up at various times, usually after an emotional shock, like the death of a parent, friend, etc. This last time, 7 weeks ago, it appeared to get worse after the neck injury and subsequent chiropractic adjustment that made it hard for me to walk, type, etc. Now the neuropathy in my extremities has resolved, for the most part, but one neurologist I’m seeing thinks my autonomic nerve is still “bruised” by that trauma.

Yesterday, I did my first session (19 more to go, over the next 10 weeks) with the LENS neurofeedback system. It didn’t cure me overnight, but I do feel remarkably better. My mind has been clearer, brighter, with an increase in short term memory and a more upbeat mood. I’m looking forward to how this progresses. Even if all it does is reduce my symptoms and allow me to go back to a normal, slightly “potsy” life, that would be wonderful.

How does this all relate to the helminthic therapy? In my opinion, the HT was making it all a lot better. Between weeks 7 and 9 I felt great. Better than I had in years — calm, relaxed, focused… healthy. What appears to have upset the apple cart was the biomechanical failure of my neck. Oops!

Some research indicates POTS may be triggered by these types of events, but have an autoimmune component too, much like MS, chronic fatigue syndrome, etc. I’m holding out hope once my hookworms and whipworms are ready to give me longer term benefits, the POTS will improve due to the “worm magic”. Meanwhile, my gut is doing really well. Despite being on Levaquin for a puncture wound in my finger (1 week ago, and 3 days left of the antibiotics), so I would say this bodes very well for the future.

Gooooooo, worms..!

Autonomic Dysfunction

I’m still waiting to get some tests done — A brain MRI with contrast, an EEG, and flexion/extension xrays of my cervical spine to see if certain postures create greater narrowing of the spinal channel or impinge on root nerves. Meanwhile, I’m continuing to have these “attacks”, and they appear to be autonomic nerve-related: neuropathy in my face and hands, tingling in the top of my head, profuse sweating, extreme stuffy nose, high blood pressure spikes, dizziness, tinnitus, and a sensation in my body and mind like the onset of a seizure. Oh, and all of this makes me a bit anxious. One neurologist prescribed a sedative to abort them, which seems to work, but so do mega doses of vitamin C, so I’m trying to go as drug-free as I can when managing it.

What sets them off appears to be biomechanical. Last night all it took was sitting in front of the computer and shifting my weight slightly. Then I felt something slip, up high around C2 in my cervical spine, a clicking sensation was audible, then the attack started. No pain, just a lot of weird symptoms, including diarrhea. It’s as if my bowels don’t have a neural connection when this chain of events takes place. Sometimes I’m unable to even initiate peristalsis, and that’s a little spooky.

So what does all of this have to do with helminthic therapy? I see a strong potential connection, if I turn out to be one of the lucky people who get long term benefits. Apparently, many ulcerative colitis sufferers, even if they are currently in remission like me, can develop symptoms of autonomic dysfunction, or AD. If that’s the case, and if the helminths can keep my UC in remission, I’m willing to bet they’ll also calm the inflammation in my central nervous system. The fact that HT has been documented as effective against MS, where healing demyelination is the goal, perhaps if there’s an autoimmune component to my autonomic dysfunction I can find relief, too.

Right now I’m exploring the possibilities, and I’ll know a lot more with test results. When I look back over how my autoimmune issues have developed, this neurological component (high sympathetic state)  is something I’ve been coping with for a good part of my life. These most recent symptoms feel more like a progression from that early point, something where a low threshold was breached, rather than any isolated development. That gives me a lot of hope it can be reversed. Go, worms!

Combo Therapy, the New Frontier

In an ideal world, we’d probably all get our helminths shortly after birth, in a broad array of various types, and never develop the autoimmune issues that call these “old friends” to our rescue later in life. But in the moment, we sick people do what we think is best, especially when it comes to saving the travel time, and the money, this therapy requires.

If I had it to do all over again, I think I would have inoculated with 55 Necator Americanus hookworm first, and then waited for my immune response to stabilize. With that accomplished, as a distinct step 2, I would have done my 500 Trichurus Trichiura whipworm. In my opinion I stand a good chance of benefiting from each type of worm, given my medical situation, but doing both at once may have presented some increased challenges. Keep in mind I’m just speculating.

Right now, those trying “combo therapy” with hookworm and whipworm are the new pioneers of HT. From what I’ve been told, there’s not enough data yet to predict what the side effects phase will be like for us. And, to make matters even more complex, everyone reacts in their own individual way — even to doses with hookworm, or whipworm, on their own. In my case, the immune response to the combination has been intense and prolonged. This is not surprising given my history of ulcerative colitis and allergies to foods, pollen, mold, medicines, etc. But that very response is the basis of the therapy. This current “pain” might become my eventual “gain”, since being very reactive to helminths is most likely what provokes their “good chemistry”. In other words, without the helminths pushing my malfunctioning immune system off course, it cannot correct itself.

There are inexact ways of quantifying this. On an absolute count, a year ago my eosinophils were slightly elevated at 580, so the HT probably began when I was already mounting several allergic responses to things I encountered in daily life. A very recent blood test, using a differential count, shows my eosiniphils at 14% (normal range is 0-5%), which seems to be typical for a parasitic infection. I interpret that as good news, actually. It means the worms are alive and kicking. And remember, I’ve got two parasitic loads inside me, so there may be some synergies, for better for for worse.

Right now I’m just trying to figure out how best to cope with these symptoms, which include slight edema (more often at night) in my hands and ankles, beginning a week or so ago. After a 3 day reprieve from diarrhea the GI trouble is back again, and so are the cold sweats. Do I take prednisone again, for a brief time, or do I continue to ride it out and medicate with lots of buffered vitamin C? What’s going to serve me best in the long run? I feel like I’ve got access to really smart people, with good ideas, but nothing is absolute here. We’re all individuals and pioneers, finding our way.

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!

Biomechanics.

I’m not sure how typical or unusual this is, but I found out last summer the hypoglycemic symptoms I’d been having, and also the electrical jolts in my extremities, the hair falling out, numbness in my face, the dimming vision and tinnitus — I found out this wasn’t early stages of MS, as I had feared, or any other major medical situation. Instead, I was referred to a great chiropractor, he adjusted me for the first time in my life, and this treatment alleviated all these seemingly disparate symptoms.

His explanation was pretty simple: the neck can slip out of alignment from bad posture in front of a computer, this compresses key nerves that send impulses to every organ of the body. An adjustment will “reboot” the nervous system, and reestablish these important connections. Realignment of “subluxations” can also improve blood flow to the scalp and brain. It took a few sessions for the benefit to stay consistent, and for the last few months I’ve been feeling pretty good.

Don’t ask me why I didn’t just go back to the chiropractor when things went haywire a week ago. Today I did, and I’m feeling much better. Not 100% yet, but much improved.

The question remains, why did the helminthic therapy effects seem to disappear, and once my neck and spine are behaving again will I suddenly feel that “worm high” coming back? Time will tell. Today I was noticing their characteristic GI disturbance again, this after many days of a normal gut, so I know my “old friends” are still with me. For now I’m just trying to focus on the big three: adequate sleep, a good diet, and consistent exercise.

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.”

Eat, to avoid allergies.

Overall, my progress has been quite good with helminthic therapy, but tonight (day 58 post-inoculation) I had another allergic episode. It wasn’t as bad as some have been in the past, but I did need to shovel down a fair amount of vitamin C, maybe ten 1,000 mg tablets, though the course of it. This was unpleasant, as always, but I was able to gather what seems like really important information from the event.

It occurred to me these attacks always happen around the same time — mid afternoon to early evening. I wondered if maybe the helminths tend to be more active during those hours. Then another conclusion presented itself: low blood sugar. Most of the recent “worm flu” events I’ve had are consistent with getting caught up in work and skipping meals. On the days where I’ve been less focused on tasks, and eating solid meals, I seem to do just fine. So I quickly fixed a bowl of yogurt, added fresh blueberries, a dash of stevia, and a shot of whipping cream, for some extra calories. Not ten minutes later, my allergic response (congested nose, tinnitis and tightening throat) disappeared.

That got me wondering if there might be a connection between low blood sugar, histamines, and generalized allergic reactions. Lo and behold, there seems to be a solid correlation. In fact, the more I looked, the more it appeared to be the case — autoimmune issues, histamine intolerance, food and seasonal allergies, may be exacerbated by a lack of “fuel” — even conditions as far-ranging as narcolepsy. So next time you feel that “worm flu” coming on, take some time out and feed yourself. And if you want to steer clear of it all day long, eat frequent small meals with plenty of protein, as this is the best way of coping with hypoglycemia, from what I’ve read.