Sunday, November 11, 2012

Necator americanus, I love you

It is November 11, 2012.

I feel better today quite possibly than I ever have in my entire life. I have been feeling very good, unbelievably good for at least three weeks now, actually seen a very upward trend for between four to six weeks.

This is an incredible thing because I am feeling as I did when I was a small child. I probably have not felt this good since I was five years old and that was forty-two years ago!

My autoimmune disease was already well-entrenched when I was seven, the evidence being profound allergic shiners and chronic sinusitis at seven. Those were different times and my parents didn't really even know what allergies were when they saw them, they were so uncommon in the early 1970s. I was dairy intolerant and forced to consume liquid milk daily, which no doubt did not help either. I had multiple bouts of tonsillitis, multiple courses of penicillin and had my tonsils out at age 5.

I did not have classically florid allergy symptoms until I was twelve, but I think I was dealing with a lot of chronic inflammation by seven. I was already having sinus infections that lasted for months and got on the antibiotic treadmill, probably taking antibiotics at least five or six times per year. The illnesses and treatment affected my personality. I had been absurdly extroverted and exuberant as a five year and I turned more and more inward with every year that went by from age seven on. Most people know me as very introverted. I would spontaneously dance all the time as a little child and by seven, it was like the music was gone from my life.

The only time I have felt this good was after I was inoculated with hookworm in Tijuana in June of 2011. I felt fantastic for seventeen days in a row, truly remarkable given the only times I have felt particularly good in my adult life have been starting a course of prednisone and then it unfortunately doesn't actually last one entire day. I guess my body caught up with the worms then and unfortunately, my beautiful wormy honeymoon with my twenty-five new friends drew to a close.

As a quick recap, we went to San Diego a little bit more than a year ago (November 5, 2011) for the second time. I was already hosting twenty-five hookworms and added another ten.

That November was a very hard month for me. Right before Thanksgiving, the very old lady I was taking of a few hours a day died a very painful death within days being put on a new medication. We also found out that my elderly neighbors, one on each side of my house and a part of my life since childhood, died. My elderly mother also needed to get in to see a specialist for an urgent referral for what all of her doctors assumed was cancer.

Things went downhill from Thanksgiving to New Years. I got sick at Christmas with one of my interminable sinus infections. I woke up New Year's Day with a migraine and it lasted for seventy-two horrible days.

I was put on multiple courses of antibiotics to try to deal with the infection in my head.

I don't know what was going on with my worms. There was the possibility that there had been some factor that negatively impacted them, something dietary or a medication. Unfortunately, there are a lot of variables at work and it's hard to know which could be significant. Perhaps my hookworms were just stunned. After another miserable spring, I had to go have my own biopsies for six suspicious pre-melanomic sites, which involved having injections of lidocaine. Given issues with our wonderful health insurance system in America, there was no other way of getting the procedures done without lidocaine, because of the reimbursement schedule and the amounts of time involved.

We decided that everyone would top off in the beginning of July and I assumed that my worms were either gone or defunct, since I had lidocaine at the end of June. So it was another twenty-five as a top off. That was around July 3. It's been eighteen weeks now,almost 126 days. I would assume I'm hosting more than 25, since I am feeling so much better continually than I did with my initial 25.

I notice now significant decrease in the amount of continual congestion that I have dealt with for what feels like forever. I have significantly less swelling in my face, wrists and ankles. It seems like my beyond lethargic adrenal glands are actually functioning, because my continual thirst and salt cravings are significantly diminished, more than I actually can ever remember. I got a cold in September and it lasted only eight days and did not turn into a full blown sinus infection. This is only the second time in my adult life this has happened (the other time being the day after I was first inoculated.)

I feel fantastic and the degree of anxiety that I've dealt with my whole life is significantly lower. Now, of course, this may well be as a result of my children's incredible health improvements of the last year. My autoimmune disease took a harsh toll on my life before I had children, but it was nothing compared to dealing with two very sick children twenty-four hours a day, especially a child who cannot eat or sleep. The minimal comparative vivacity I retained from age seven to thirty-seven went out of my life entirely. I lost the ability to function such as I had before, living for months on four hours of sleep a day and waking up to dozens of times a night for over seven years. I thought I would never recover abilities I had taken for granted my entire life -- learning foreign languages, writing, retaining any information for more than a few minutes, actually really enjoying anything, for that matter. It's a horrendous row to hoe, being the mother of a very, very sick child with no end in sight and no real help except an overworked, exhausted and chronically ill husband.

My ten year nightmare of dealing with a very, very sick child is practically over with, entirely, as my daughter told me three days ago, "My tummy hasn't hurt for a long, long time and I'm taking almost no medicine. I think the [hookworm] treatment is working, Mama!" My son is blooming, now almost a month post-antibiotics and his PANDAS is kicked to the curb. I don't know if it's my immune system being stood down, my children's improvements or both. I'll take it, whatever it is.

Wednesday, October 17, 2012

Hookworm trumps PANDAS

This is an example of what increased sensory processing disorder from PANDAS looks like. My son chewed the sleeves off of every long-sleeved shirt he owned last year. This is the only shirt I actually kept because the holes were smaller and it wasn't actually destroyed.

Our son had his first inoculation with hookworm in the beginning of November of 2011. He has been hosting hookworm for eleven months now.

Our son, A, is doing wonderfully. The biggest shock came to us last week after going to the pediatrician for a croupy cough and sore throat. They swabbed him and told us his strep culture was negative. Three days later, they called us to say that his slow culture came back and he was positive for strep.

The shock is because he had PANDAS last year at this time. PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS is essentially an autoimmune reaction in the brain to the antibodies that the child's body makes against strep. This autoimmune reaction causes inflammation in the brain and nervous system resulting in anxiety and obsessive compulsive behavior. See this linky for more information about PANDAS.

Our son had multiple ear infections in summer of 2011 which set off the PANDAS, which remained after multiple courses of antibiotics, ear surgery and more antibiotics. Many children with this condition get much, much worse if they ever have another strep infection again and they take prophylactic antibiotics for it until adulthood. Our son was on antibiotics until two weeks after being inoculated with hookworm. His PANDAS symptoms were for the most part completely gone six weeks later. We had no idea how another strep infection would affect him, but we assumed it would be very bad news.

Given the nightmare we had gone through with PANDAS the year before which is all too horribly memorable, I am completely blown away. My son had a very active strep infection, was cranking out the antibodies and we were seeing only a very, very minor uptick in his PANDAS symptoms. He was slightly more clingy and starting to go through closets, but none of it was as bad as what we'd experienced-- not by a long shot.

When he had full blown PANDAS from July to November 2011, our life had been turned into hell with his galloping anxiety, titanic amounts of separation anxiety, his obsessive and compulsive destructiveness and renewed sensory issues that were off the charts. He asked me hundreds of times a day,"Mama, are you still here?" sometimes more than two times in one minute. He could not bear for me to walk four feet away from him to throw a piece of trash in a can without him coming with me and holding my hand. He could not go in the bathroom by himself. He couldn't stand to be in our house without the lights on in every room, twenty-four hours per day. He would wake up in the middle of the night with panic attacks that I had left him. He was chewing the sleeves and necklines of his long sleeved shirts and sweaters in October, destroying every single long sleeved shirt and sweater that he owned. He was obsessed with bad things happening, telling us when we were eating outdoors during the summer and the wind blew that it was airplanes with bombs coming from Iraq that would kill us.

This horrible illness was mitigated somewhat by continual administration of antibiotics. The doctor told me had no infection of the ears or tonsils or anywhere else, but the PANDAS raged on from June until mid-November and he was on antibiotics the entire time.  At the beginning of November, we went to San Diego. Three weeks later, with no antibiotics, the PANDAS started to wane and amazingly, pretty much completely disappeared by Christmas.

Now, the issue has been that administering the antibiotics would affect the worms negatively, because antibiotics kill the gut microbiota that the worms are living on. And ironically, this has been the case. He is experiencing more anxiety and more separation anxiety as the worms deal with the affect of the antibiotics on the microbiota of his gut. He becomes more symptomatic within an hour of administration of the medication. Today is the last day of amoxicillin, thank goodness. He announced this morning, an hour after getting his dose that he doesn't want to trick-or-treat this year because it's too dangerous. We assured him that it is perfectly safe and are hoping that he will be much better shortly. He is better and better throughout the day, the longer it's been since his previous dose. I'm giving him probiotics to attempt to mitigate the damage, but of course, they cannot undo the affect of taking ten days of amoxicillin. Only time and more probiotics can do that.

But the amount of anxiety he's been dealing with and the amount of separation anxiety he's expressed has been trivial compared to what we dealt with on a daily basis last year. He's going to the bathroom alone. He's not interrogating me as to where I'm going every time I leave a room or take a bag of garbage outside. He's not chewing his shirts until they fall apart. For all of this, we are truly grateful and more than that, astounded.

A long overdue update -- one great year with hookworms!

I started writing a post back in the end of June, for my daughter's and my wormaversary at the end of June, but never got around to finishing it. We had a great and busy summer. And so, now this long belated update. I will break it into separate blog posts for each of us as I have done previously, or it will be too long to read in one sitting.

Our family had a fantastic summer. This was the first "normal" summer we have had since my daughter was born, nine and a half years ago. Both she and her brother made huge developmental strides this year and we are thrilled.  Both were very healthy all summer long.

We have been members of a community pool from before our daughter was born. She was so sick that we have never really been able to go there that much. Both she and her brother were so thin that they would start to get hypothermic if the water was below about 95°F and this despite the fact that both of them wear neoprene shortie wetsuits on top of their swimsuits. We have been trying for years to teach both of them how to swim. Well, this year it finally happened! My daughter got over her phobic reaction to having water in her face and taught herself to swim. My son took lessons and learned.

My daughter was thrilled to go to the pool with her best friend, that relationship being another huge milestone for her. They are thick as thieves and it has totally changed her life. She looks forward to going to school now, because she wants to be with her friend. She is blooming socially. A huge part of it is that the hookworms have drastically reduced the amount of anxiety she experiences on a daily basis. She is even making friends with other kids in her class and feels much more socially at ease.

I have started giving her Floradix, the German liquid iron supplement. She has been borderline anemic for a while. She could never tolerate it before because it has traces of carrots in it and she was reactive to carrots. She is not reacting now. Taking this supplement has dramatically increased her appetite. She is actually eating somewhat like a healthy child now, something that has never happened before in her life. She went to the doctor last week and weighed 56 pounds, the highest weight she has ever had in her life. She has gained at least 13 pounds since we went to San Diego the first time. This is amazing, given her average weight gain per year since her first birthday has been about two or three pounds.

She was playing with her brother the other day and they were discussing airplanes and she said to him, "I'm so glad that there are cheap airplane tickets because if it weren't for cheap airplane tickets, we wouldn't have gone to San Diego and now my eosinophilic esophagitis is better than it's ever been!" She has told me repeatedly how lucky she feels that I found out about this therapy for her and that she was able to have it.

She has gotten several foods back -- tomato, rice, and potato. She also is able to tolerate dairy much better. She's currently only eating actually eating organic butter and food that has cow's milk baked or fried into it (like a muffin or cookie), but her ability to tolerate these small amounts of dairy is dramatically better and a huge achievement.

More amazingly, she is using a far smaller amount of steroids than in the last three years. She is using about half as much Pulmicort on a daily basis and has had very little esophageal pain. She is so much better than we are able to start disambiguating her physical issues which we could never get to analyze because there was so much going on with her esophageal pain. She is sleeping much better now than she ever has in her life.

Sunday, March 25, 2012

March 25, 2012 -- saved myself for last

First and foremost, my allergies are significantly reduced from last year. I'm still taking medication, but having no breakthrough symptoms yet. Now, this is a freaky allergy year, a very freaky one, because everything has been accelerated by at least four to six weeks. April 15 used to be the highwater of my misery and who knows when it's going to hit now, thanks to the bizarrely hot temperatures we had starting in February. But overall, there has definitely been a significant improvement. I'm looking forward to seeing how it plays out for the next three months, since oak pollen is my worst allergen of all. It has already started tinting everything it falls on chartreuse. We shall see what happens. I hope this means it will also be over sooner rather than later.

One thing I noticed since topping off was a lot more intestinal pain from my new friends than I had on my initial inoculation. I started with twenty-five and only added ten more, but I noticed a lot more pain, specifically a burning sensation around my umbilicus that would last for a minute or two. It never lasted more than five minutes at the very most. I've had no real diarrhea at all from hookworm.

My hypothyroidism seems to have gotten better because I have been able to cut the amount of Armour that I use in half after supplementing with selenium and iodine. I don't know how much of that is from helminths. I have taken selenium before and it never had that effect. Now I'm taking it ever other day and my thyroid seems to be doing a lot better. No return of short or long term deficiency symptoms.

My anxiety is still significantly reduced from pre-inoculation. Things just do not bother me the way that they did. I really feel as though my anxiety just completely vanished with the first inoculation. It is a great feeling after dealing with a lot of anxiety my entire life. Just that alone makes the treatment worthwhile for me, personally. It really makes me wonder how profoundly systemic inflammation affects the quality of our lives and how severe it can be without us even necessarily being aware of it. I saw that I had inflammation all over my body -- in my hands and feet, my arms and legs and I don't doubt that I have it elsewhere, aside from my chronically inflamed upper airway.

Update Part V from the World's Worst Blogger

OK, so here we are, almost caught up to real time, March 25, 2012.

This has been a freakishly warm last six months, in the big picture where I live, in greater metro Washington, DC. We had temperatures in the 80s in February. The plants here are going crazy. The cherry blossoms are basically over now and oak pollen is now tinting our lives a sickening shade of chartreuse. It rained yesterday and the storm drain at the foot our drive was full of charteuse scum.

First, the update on my little girl, who just turned nine. Since starting helminthic therapy at the end of June, she has gained seven pounds. She has grown four inches. Food is still a struggle, but thank God, the days of nothing but soy pancakes are over. She has gotten back a few foods -- rice, tomatoes, and potatoes. We have discovered she tolerates lamb very well.

As or even more significant have been the psychological changes in her. She took Singulair for a year back in first grade. It was a disaster for her. It made her have serious separation anxiety for the first time in her life. She didn't want to go school. She had panic attacks. She stopped taking it in June of 2010. Unfortunately, even after discontinuing it she did not bounce back. All of second grade was miserable for her. We had to walk her to the door of second grade every day. She made no friends. She was on the edge of having a panic attack every day. She had rampaging anxiety and nothing made it better.

Then she got hookworm in June of last year. Her anxiety vaporized completely, possibly for the first time in her entire life. She completely changed. One weird symptom of her illness and anxiety was that she couldn't stand to be exposed to anything that was frightening or involved suspense at all. She didn't want to listen to Mr. Rogers reading Goldilocks and the Three Bears. That's what non-stop anticipatory anxiety because your adrenal glands are cranked up to an 11 all the time does to you. That's what being in pain, twenty-four hours a day does. You can't stand even hearing a little kid story about something bad being read by America's uncle who entertains three year olds when your life is nothing but pain and more pain.

This winter, she read all seven Harry Potter books. She watched the movies on DVD. She announced to me very nonchalantly, "Scary stuff doesn't bother me." She makes jokes she never would have made before. She has a best friend now and they laugh about Harry Potter and Voldemort together. Voldemort!!! She can deal with Voldemort when last year she couldn't stand to listen to the evil queen on a tape of Disney's Snow White that her baby brother listened to and she would run into the other room to get away from it. She laughed at her brother's silly, irrational fears when his PANDAS was raging when it used to be him laughing at her for years.

She had huge amounts of anxiety over doing homework and practicing the violin. It's much better now. She's growing as a person in ways that we've been struggling with for years. These aspects of life do not show up on a biopsy, but they matter as much. I would say that hookworm has been worth it for her even if her eosinophilic esophagitis never gets any better, though I think it will.

She's just getting over chicken pox. She couldn't have the vaccine because it has porcine gelatin in it and she's extremely allergic to it. I was very worried about how it would affect her, given how extreme her illness is and how everything, historically, has made it worse. A cold could mean a three week absence from school. Well, she had two or three miserable days and now she's fine. Her immune system did great. She only missed four days of school and was dying to get back. She is sleeping better now than she ever has in her life. For a kid that didn't sleep for six and a half years, that is a huge accomplishment.

Now it's allergy season and she's doing OK. No sneezing so far, no red eyes, no increased EE episodes. We're still waiting to see what happens with the whole allergy season. I can say definitively that she is much better than she was last year, when I was promising her that I would do whatever was humanly possible to make her better.

She told me back in September that going to San Diego and getting hookworm was the best thing that ever happened to her.

Update Part IV from the World's Worst Blogger

We got back from San Diego and my husband's uncle died in Oakland at Thanksgiving. He had to go back and stay in California for nine days. He is very allergic to dust mites and had to stay in his aunt's house that had wall to wall carpeting. He got really sick from it. Despite this, he said that he could tell that the hookworms were making a big difference. He felt much less anxiety and much more social than he would normally. (I have noticed this effect as well and wonder now how much anxiety and a desire not to be social is related to inflammation, as a subconscious anticipation of pain if touched or jostled.) He was able to work every day on his computer doing software development and stay up late with his relatives.

Like me, within a few weeks of inoculation, he looked down and got the shock of his life that suddenly, his ankles and feet were much smaller than previously. Like me, he had a huge amount of swelling around his feet and ankles that he was completely unaware of because it had been that way for years. His ankles look chiseled compared to the way they appeared before. His face is now much less swollen, particularly from right below the cheekbones (around the bottom of the earlobe level) to right above the eyes.

He has felt better and better ever since. His sleep is much better; his hypopnea is significantly reduced. The amount of naps he takes have been cut way back. He doesn't have to sleep fourteen hours on the weekends now. He sleeps better at night because he is much less congested. He says he feels as though he has more energy than he can remember in a long, long time. He's started running and exercising at the gym regularly. He's running 5K easily on the treadmill in half an hour and has signed up to race this spring.

When he got back from California, he started making organic dairy kefir at home and drinking it. He's also bought a SCOBY and is making kombucha tea. And suddenly, for the first time in two decades, his diarrhea is gone. It's been gone for three weeks now. Before getting hookworm, he would consume tons of probiotics and improve marginally, but if he skipped a day, it was though he hadn't taken any ever. He simply couldn't maintain enough to not have diarrhea without taking more multiple times a day. It was as though he was constantly just getting off of a course of antibiotics.

He now has the energy to eat better and is trying to stick to a paleo-ish diet. We're starting to wonder how much of his ongoing diarrhea is from having a leaky gut. He thinks that the kefir seemed to reduce it but that he couldn't get real traction until he had hookworm as well.

Update Part III from the World's Worst Blogger

Two weeks after getting home from California, my son's antibiotics for his PANDAS ran out. This was propitious, because the worms do not do that well if a person is taking longterm antibiotics. Amazingly, the PANDAS was on the wane and then gone. We got our son back. He has gotten better and better with no recurrence, thank God. He can now run in from the edge of the sidewalk block of school all the way to his classroom by himself. He's no longer asking me if I'm still there over a hundred times a day. He's no longer afraid to go into the bathroom without me even in broad daylight. The panic attacks have stopped. He has completely stopped chewing his clothing. He is back to the same happy go lucky kid he was before.

I do not know how much hookworm had to do with his recovery from PANDAS. I do know that before we went to San Diego, there was no end in sight and that we were discussing with our pediatrician the possibility of medication with antibiotics daily until adulthood. My hunch is that hookworm has had a part in making him able to recover and sustaining it.

Teachers at school noticed that for the first time, he seemed less congested. This was an accomplishment given that he had a surgical procedure called turbinate reduction while he was having his tubes put it and it did absolutely nothing to reduce his congestion.

We have been working for years on teaching him to read. We got a great computer program called Funnix that is a Distar based program for teaching reading with phonics. Every lesson comes with a work sheet. At the beginning of us using this program, my son could barely hold the pencil by himself. He cried during every worksheet that it was too hard. I was holding his hand in mine to help him write. His hand was so weak that he had serious problems writing seven letter As on a line. He would write one by himself, would write one with me and I would end up holding his hand and writing the other five. As I mentioned in the previous entry, last spring I was told that there was a possibility that he would never be able to actually write using a pen or pencil, that we should consider assistive technology, using a computer for writing for life. This was after fours years of developmental preschool and three years of occupational therapy.

Three months after inoculation with hookworm, he was doing a lesson every day and writing out the entire worksheet by himself. I went to a meeting of his special education committee at school. They were astounded by what happened with him from Thanksgiving to after Christmas. He had made huge progress, over a year of progress in three months of his fine motor skill development. The OT was absolutely blown away. His special ed teacher was astounded. His writing skills have gone from barely being able to write his four letter name at all to being able to write six sentence stories by himself.`He is now at or above grade level with his neurotypical peers.

The amazing thing to us is that we weren't even considering how the worms would impact his autism and neurological issues. We were more concerned about the allergic component. Now there is no doubt in my mind that what has been going on with him has had a encephalitic component. Inflammation is the name of the game. This makes sense since the main biochemical treatment that gave him the ability to speak was very large doses of cod liver oil. Fish oil is extremely anti-inflammatory.

Allergy season is now underway in earnest in the DC metro area because of the freakishly early spring. My son has been able to skip days of antihistamines, has had no sneezing, red eyes or congestion as of yet. Of course, worse is to come but I'm hopeful that we're seeing a big improvement on the allergy front as the hookworms become established.