Eventually, enough was indeed enough. Due to a growing intolerance to foods, I had to kill off my 2000 whipworm and 55 hookworm combination with a three day course of Mebendazole (late October, 2011) and start over. On November 22nd I reinoculated with 50 Necator Americanus hookworm and decided to avoid the whipworm this time, since they appeared to contribute to an increased allergic response and most likely compounded the constipation from antibiotics. I feel I can now control my ulcerative colitis with probiotic implants and as long as hookworm reduce my allergies, this will also help my IBD improve.

So far, so good. I’m really feeling better this time around. Tomorrow (Tuesday) will be 6 weeks since I inoculated with 50 Necator Americanus hookworm. Last time, when I did the 55 hookworm/500 whipworm combination, by week 7 my asthma disappeared, so that’s a potential benchmark. If anything, I feel like I’m having earlier symptom relief on round two, and am reacting less allergically in general.

My nose started clearing around Thanksgiving, due to the “bounce”, which is an early symptom relief some of us get from hookworm, then this upper respiratory relief became a longer term benefit about a week or so ago. I hardly ever react to things like house dust anymore, and if I do it’s a more typical reaction like a sneeze, something I never could manage when my immune system was a deer in the headlights.

In October I was experiencing incredible food intolerance — reacting to nearly every protein I tried to eat — with a stuffy nose, tinnitus, and throat tightening sensation. The last week or so I’ve noticed my appetite increasing, and seeing that as a signal, I’ve since been testing and enjoying normal portions of pork and lamb, plus smaller amounts of beef. I’ll try things like chicken and fish at a later date when it’s more obvious the hookworm are providing benefits. Vegetable fats and proteins, like avocado and coconut, have also been fairly problematic in the past, so I’ll wait a while to test those, too.

Should anyone ever wonder if hookworm can help with salicylate sensitivity, in my case I think it’s doing exactly that. In early October I reacted to an over the counter product with salicylates (acne cream and a skin wash) when I used it on my face, and since then foods higher in salicylates would trigger a similar reaction — nasal congestion, tinnitus, increased heart rate and anxiety, asthma and throat tightening. It was no fun at all! Last night I tried eating a boiled carrot, since they are high in salicylates, and barely reacted. This morning I’m sipping a cup of organic coffee (also pretty high on the scale) and enjoying it. None of this would have been possible a month ago!

One of the best benefits now is relief from anxiety and muscular tension. I’m waking up feeling rested, with a very relaxed back and legs, and am drowsy enough to take naps, which creates a virtuous cycle.

Another thing I’m noticing — my face is clearing up. When my gut flora is out of balance, I often get acne to each side of my nose.

By the way, I have a new GI doctor who knows Joel Weinstock at Tufts University, is a major proponent of helminthic therapy, and (as I understand it) has sat on panel discussions with Weinstock. This doctor of mine also does fecal transplants for quite a few of their patients and has told me FT can be really helpful in the right applications, including my own condition. Right now the course of treatment we’re following is to keep things simple and allow the hookworm to get established.

Regarding acne relief, my GI says hookworm appear to literally change the human biome for the better, influencing which of the good bacteria survive and which of the more pathogenic ones don’t, and how large or small each population is allowed to grow. New (and old) research suggests a strong link between SIBO, acne and neuropsychological issues. Note the Stokes and Pillsbury study here, done 70 years ago, and leading edge research is just now catching on to their same hypothesis today.

The possibility of SIBO for me is very real, but I haven’t been tested to confirm it. Diagnosis can involve drinking sugar water to create gases that are then measured in the upper GI tract, but too much carbohydrate can cause flare ups of ulcerative colitis, and I don’t want to take the risk. The best approach in my opinion was to act as if I have SIBO and treat it with diet and probiotics, not antibiotics (which is a more conventional approach). For now, this has meant adding even more soft-cooked vegetables to an already high fiber diet. I’m literally sweeping the bacteria out of my small bowel and into the colon with a “broom” of large plates of veggies, mixed with modest amounts of animal protein. Too much fiber can create problems of its own, like undigested material that continues to feed bacteria, but this mechanical approach to addressing SIBO is short term and focused. As soon as possible I’ll want to eat a lower residue diet.

Meanwhile, I’m feeling well enough to go back into the world and work again, which is great, but in the interest of stabilizing as soon as possible, and cementing my progress, I would like to get up to a full dose of hookworm at the 3 month mark. I’m anticipating doing another 50 hookworm 6 weeks from now, or perhaps even 70, to get up to a 120 hookworm population. Given how minimal the side effects have been for me, I do think I can now handle 70 at once, especially with the 50 in me already, which should ease the immune response.

I’ve also ordered a microscope so I can keep track of my hookworm egg count. I don’t plan on being too precise about this. I don’t care how many eggs per gram of stool they are laying. I just want to make sure they are alive and well, so the plan is to check for ova every few months, and base most of my population maintenance on inoculation timing and overall symptom relief. If things are going well, my instinct is to just let things be and enjoy the ride!

This time around, vague abdominal discomfort and mild diarrhea were the worst of it. I only took 5 to 10 mg of hydrocortisone for the first 5 days, as a precaution, which is basically a physiological dose, about half what my body would produce in a day. After that, I took Zyrtec at night, on and off for about a week, and only when necessary. The goal here is to be drug-free! I’ve also supplemented with 3 mg of melatonin, which has helped me sleep.

Since I’ve got stenosis and degenerative changes to my neck, which has probably affected my autonomic nerve, it’s hard to know if the insomnia is related to whipworm or caused by purely biomechanical, neurological issues. My hunch is whipworm have increased my eosinophils a bit and caused a temporary nervous tension (different from anxiety, it’s more physical) during the day, resulting in sleep disturbances at night. Note the following document here. However, keep in mind the insomnia started, and was at its worst, when my neck was injured back in June.

Here’s the good news: starting two days ago, my dysautonomia seems to have improved. My mood is better, I didn’take any Klonopin yesterday (medication prescribed for transient hypertension after the spinal injury), and I woke up feeling more rested. What caused the change? I’m saturating with VSL#3 probiotics, am eating a very low carb, sugar and grain-free diet, having twice-weekly chiropractic adjustments, using cervical traction devices to undo kyphois, and… getting regular exercise. Yes, exercise! My orthostatic intolerance has improved dramatically, to the point where I can now stand for an hour or more, and ride an upright exercise bike for 40 mins at a time. It was merely two months ago I was bed-bound, hardly able to walk or stand, and unable to ride the bike for even 5 or 10 minutes, so the progress is nothing short of incredible.

Two days ago I was having another blood pressure spike, an ongoing, daily issue for me related to high catecholamine levels. I may have hyperadrenergic POTS , but require further testing for diagnosis. Anyway, these attacks usually last for a few hours, but this episode eased up after only 30 minutes. Then suddenly I felt a familiar, deep sense of calm, much like my initial HT “bounce” back in early May, 2011, for a blissful 15 minutes. Is this the “worm magic” returning? Relaxation this deep is unique to my helminthic therapy, it’s ground-breaking and wonderful, and one reason I have come to believe in the “old friends” and hygiene hypotheses.

Thinking back, I’ve probably had low-level POTS for years, and at the time I thought it was just allergies. Cervical stenosis, likely to be congenital in my case, and neck trauma from computer use, may have contributed. But there’s also a potential mast cell component to POTS. By addressing the autoimmune aspects with helminthic therapy, I hope to conquer the allergic/immunity side, while addressing the degenerative, outward changes with neck traction, stretching, and gentle chiropractic adjustments.

All I care about is getting better, and without resorting to pharmaceuticals like Klonopin, when I can use a holistic approach instead. Positive trends gather their own momentum: laughter, love, community, happiness and connectedness — it’s all obviously part of health. My goal is to heal my body enough that I don’t even need to think about it anymore, and I can focus instead on enjoying life. Simple enough!

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.

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.

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.

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..!

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!

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.

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!

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.