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.
Sunday, November 11, 2012
Wednesday, October 17, 2012
Hookworm trumps PANDAS
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.
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.
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.
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.
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.
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.
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.
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.
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.
Update Part II from the World's Worst Blogger
We went to San Diego in the beginning of November because the kids had a long weekend from school. We left for San Diego from the East Coast on Friday and went back on Tuesday afternoon.
Everything went fine. The kids loved San Diego. Garin's driver picked us up at the hotel and we went to the clinic in Tijuana. It doesn't take long to get there, maybe 35 minutes from downtown San Diego. I met with Dr. Llamas to go over my son's medical history and how my daughter and I had been doing. Then my husband met with him to discuss his own history.
I had discussed with Garin that my daughter and I could get topped off since we would be there and we had very low amounts of hookworm to start with. He agreed this was a good idea, so we went ahead and did it.
I told my son he was getting a "Magic Bandaid" and it would be his ticket to Legoland. A neurotypical kid would have no issues with getting the bandaid with hookworm larvae applied. It's just somewhat itchy on and off, you keep it on for four hours and you're done. My son is not neurotypical, he could barely stand to ever have a band-aid on because of his sensory issues and does things like ripping IV lines out. But apparently Legoland is a powerful inducement. He was very itchy on and off for the first hour but he did fine.
Garin's driver took us back to our hotel and we had another great three days in San Diego. We went to Legoland with friends, loved eating breakfast at the Broken Yolk in the Gaslamp, saw the aircraft carrier Midway and had a fantastic time. Little did we know even better things were to come.
Everything went fine. The kids loved San Diego. Garin's driver picked us up at the hotel and we went to the clinic in Tijuana. It doesn't take long to get there, maybe 35 minutes from downtown San Diego. I met with Dr. Llamas to go over my son's medical history and how my daughter and I had been doing. Then my husband met with him to discuss his own history.
I had discussed with Garin that my daughter and I could get topped off since we would be there and we had very low amounts of hookworm to start with. He agreed this was a good idea, so we went ahead and did it.
I told my son he was getting a "Magic Bandaid" and it would be his ticket to Legoland. A neurotypical kid would have no issues with getting the bandaid with hookworm larvae applied. It's just somewhat itchy on and off, you keep it on for four hours and you're done. My son is not neurotypical, he could barely stand to ever have a band-aid on because of his sensory issues and does things like ripping IV lines out. But apparently Legoland is a powerful inducement. He was very itchy on and off for the first hour but he did fine.
Garin's driver took us back to our hotel and we had another great three days in San Diego. We went to Legoland with friends, loved eating breakfast at the Broken Yolk in the Gaslamp, saw the aircraft carrier Midway and had a fantastic time. Little did we know even better things were to come.
Wednesday, February 15, 2012
February 15, 2012 Update from the world's worst blogger
I have to play major catch-up here. Life gets in the way and it's been very busy, but there is great news on the helminth front.
I did rebound very well from the lidocaine. It just took a couple of weeks. My energy levels were great, my daughter has been doing very well, so we were happy. My husband was very, very impressed by how well I was feeling. He had the worst year of his life, energy-wise the previous year.
My DH is thirty-five and healthy except for a lot of autoimmune issues. He has severe allergies (especially to dust mites) and psoriasis. He has two very severe, large plaques on his legs, one on each shin, that never go away. No medication works on them at all. He's also extremely congested in his upper airway virtually always. This issue is beyond just annoying; he was diagnosed with hypopnea (impaired breathing during sleep) after he totaled our car in the end of February. His allergies have a major negative impact on his ability to sleep and function.
DH also has/had chronic diarrhea over twenty years. He was so used to it, it never even occurred to him that anything was wrong until I pointed it out after years of being married that normal people do not have diarrhea that makes them live in the bathroom four days a week. I forced him to get a colonoscopy last year, which led to a vague diagnosis of something like irritable bowel syndrome.
Our son, who is six, unfortunately also has the same allergies as everyone in our family. He started the allergic march in infancy, having allergies by six months. His constant congestion and bad allergies led to recurrent ear infections. He has now had two sets of tubes and two adenoidectomies. He was diagnosed as being at risk for PDD-NOS, an autism spectrum disorder when he was eighteen months old. Five years later and huge amounts of work and remediation, the major artifacts of the neurological damage he incurred were right side body weakness, hypotonia and severe weakness in his hands, so bad that I was told in June, 2011 that we should anticipate him never being able to actually write longhand. He has attention problems and residual sensory issues as well as part of his very mild autism.
Last summer, our son also unfortunately got PANDAS after partially losing his tube from his right ear. It was stuck halfway out of the ear drum, got extremely infected and stayed that way from June until September. He had surgery in September to place new tubes and remove adenoidal scar tissue. It healed perfectly but the PANDAS stuck around despite being on antibiotics for months -- from July to November. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. It is a nightmare to deal with because it causes extreme anxiety and obsessive compulsive behavior. My son had severe separation anxiety that came out of nowhere, as in asking me 25 times an hour where I was when I hadn't moved from my desk and he was fifteen feet away. He also became obsessively destructive, taking things apart and out of drawers. It would get a little better with antibiotics but as soon as the course ended, it would come roaring back. His sensory issues, which were bad back when he was 18 months old, came roaring back. Most obvious was his propensity to mouth and chew his sleeves. He chewed holes in every long sleeved shirt he owned between October and mid-November. The day we went to see the PANDAS specialist at Children's Hospital, he chewed apart the entire seam of the sleeve of his favorite sweater.
We decided to return to San Diego and get DH and DS inoculated with hookworm in the beginning of November. The major improvement we were hoping for was a significant decrease in allergy symptoms.
I did rebound very well from the lidocaine. It just took a couple of weeks. My energy levels were great, my daughter has been doing very well, so we were happy. My husband was very, very impressed by how well I was feeling. He had the worst year of his life, energy-wise the previous year.
My DH is thirty-five and healthy except for a lot of autoimmune issues. He has severe allergies (especially to dust mites) and psoriasis. He has two very severe, large plaques on his legs, one on each shin, that never go away. No medication works on them at all. He's also extremely congested in his upper airway virtually always. This issue is beyond just annoying; he was diagnosed with hypopnea (impaired breathing during sleep) after he totaled our car in the end of February. His allergies have a major negative impact on his ability to sleep and function.
DH also has/had chronic diarrhea over twenty years. He was so used to it, it never even occurred to him that anything was wrong until I pointed it out after years of being married that normal people do not have diarrhea that makes them live in the bathroom four days a week. I forced him to get a colonoscopy last year, which led to a vague diagnosis of something like irritable bowel syndrome.
Our son, who is six, unfortunately also has the same allergies as everyone in our family. He started the allergic march in infancy, having allergies by six months. His constant congestion and bad allergies led to recurrent ear infections. He has now had two sets of tubes and two adenoidectomies. He was diagnosed as being at risk for PDD-NOS, an autism spectrum disorder when he was eighteen months old. Five years later and huge amounts of work and remediation, the major artifacts of the neurological damage he incurred were right side body weakness, hypotonia and severe weakness in his hands, so bad that I was told in June, 2011 that we should anticipate him never being able to actually write longhand. He has attention problems and residual sensory issues as well as part of his very mild autism.
Last summer, our son also unfortunately got PANDAS after partially losing his tube from his right ear. It was stuck halfway out of the ear drum, got extremely infected and stayed that way from June until September. He had surgery in September to place new tubes and remove adenoidal scar tissue. It healed perfectly but the PANDAS stuck around despite being on antibiotics for months -- from July to November. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. It is a nightmare to deal with because it causes extreme anxiety and obsessive compulsive behavior. My son had severe separation anxiety that came out of nowhere, as in asking me 25 times an hour where I was when I hadn't moved from my desk and he was fifteen feet away. He also became obsessively destructive, taking things apart and out of drawers. It would get a little better with antibiotics but as soon as the course ended, it would come roaring back. His sensory issues, which were bad back when he was 18 months old, came roaring back. Most obvious was his propensity to mouth and chew his sleeves. He chewed holes in every long sleeved shirt he owned between October and mid-November. The day we went to see the PANDAS specialist at Children's Hospital, he chewed apart the entire seam of the sleeve of his favorite sweater.
We decided to return to San Diego and get DH and DS inoculated with hookworm in the beginning of November. The major improvement we were hoping for was a significant decrease in allergy symptoms.
Monday, August 29, 2011
Wrapping up ten weeks -- real "Worm Flu" hits the fan
Since getting my tooth filled back on August 10, it seems my 25 Necator americanus friends have had a rough time of it and my immune system has been back to its boffo self. I have been very tired. I notice this particularly in a desire to sleep in mornings. I'm sure it will be getting better, but I've had a few days of being quite exhausted. It comes and it goes. In no way do I feel as terrible as I did before getting inoculated and that's a major relief. It's kind of horrifying to realize how bad I felt all the time.
The redness of my eyes that I noticed started right when I was inoculated is also coming and going. The redder my eyes, the more my hookworm buddies seem to be doing their thing. So now I'm actually happy to look in the mirror and see that redness when I'm feeling good. I had a day of feeling quite fantastic a few days ago and I'm hoping to see my worms getting better and better.
My daughter is doing pretty well. She's had a few bad days. We've probably been too liberal with the food experimentation, but it's very hard when the poor kid has spent years dying to eat like a normal person, especially after months of eating nothing but soy pancakes. It's interesting, her primary food incursion symptom presents as extreme grumpiness and agitation. She's not consciously aware of being in pain, instead she becomes hypersensitive and very irritable. But overall, she's doing quite well. I'm so looking forward to seeing if she gets major traction in the ability to eat. I'm so happy to see that she's willing to eat and experiment and she's not afraid of eating most of the things that have been no-nos for her. She has told me repeatedly that she feels her appetite is much better. She's also sleeping well, which indicates lower levels of pain. She's grown since being inoculated, her feet are much bigger than they were two months ago. Considering she's eight and a half years old and wearing toddler size shoes, this is no small thing.
The redness of my eyes that I noticed started right when I was inoculated is also coming and going. The redder my eyes, the more my hookworm buddies seem to be doing their thing. So now I'm actually happy to look in the mirror and see that redness when I'm feeling good. I had a day of feeling quite fantastic a few days ago and I'm hoping to see my worms getting better and better.
My daughter is doing pretty well. She's had a few bad days. We've probably been too liberal with the food experimentation, but it's very hard when the poor kid has spent years dying to eat like a normal person, especially after months of eating nothing but soy pancakes. It's interesting, her primary food incursion symptom presents as extreme grumpiness and agitation. She's not consciously aware of being in pain, instead she becomes hypersensitive and very irritable. But overall, she's doing quite well. I'm so looking forward to seeing if she gets major traction in the ability to eat. I'm so happy to see that she's willing to eat and experiment and she's not afraid of eating most of the things that have been no-nos for her. She has told me repeatedly that she feels her appetite is much better. She's also sleeping well, which indicates lower levels of pain. She's grown since being inoculated, her feet are much bigger than they were two months ago. Considering she's eight and a half years old and wearing toddler size shoes, this is no small thing.
Saturday, August 13, 2011
Eight weeks in August 10, 2011 -- I get a tooth filled with lidocaine anesthesia
Unfortunately, I didn't make it to the dentist before going and getting inoculated with worms. I thought I didn't have that much to worry about, only having had one cavity in the preceding 45 years. Dealing with a very sick kid doesn't leave a lot of discretionary time or money for things like going to the dentist. Being so sick and exhausted yourself doesn't make it any easier, either. Our financial situation has not made it possible for me to go to the dentist for years but I'm lucky to have pretty good teeth.
I went in for my cleaning and exam appointment and found out I had a huge cavity in my farthest back molar on the upper right side. First I thought I'd get the molars on that side extracted. The dentist wasn't too thrilled about that idea because of my "advanced age" and I was even more concerned about the anesthesia choices. When my provider told me that my worms should be able to survive novocaine, I decided I'd go that route and just have the tooth filled. Skipping anesthesia would be out of the question, given the extent and severity of decay in my tooth.
I hope this account will be of interest to those considering hosting or actually hosting helminths. I have seen no one else actually write of the experience of having a local anesthetic and what it did to their hookworms. The conventional wisdom is that the hookworms will be compromised in their ability to function for as little as four or as much as eight weeks. This account should provide some specifics, though it's still unfolding as I only had the tooth filled three days ago.
The cavity I had was so huge, the dentist spent over an entire hour just drilling the decay out of this one tooth. I was very lucky that the decay was diffuse around the tooth and it hadn't gotten into the pulp chambers, the nerves or the blood supply. It took an additional hour to put the filling in. Fun times!
When the lidocaine wore off, I had pain in my sinus nerves, not the tooth that had been filled.
Day One after having my tooth filled, I felt horrible. Exhausted and achy, instantaneously back to the way I felt all the time before I got inoculated back in the end of June. My ankles and wrists are swelling. My sinuses were painful through my eye teeth on both sides. The exhaustion is unbelievable. No caffeine helped at all, it just makes things worse, a sign of my adrenal fatigue rearing its ugly head. I also felt brain fog seeping back in. I was so tired that I could barely drive home at 6 p.m. and went straight to bed at 6:30. I had to get up and deal with kids from 9:45 to about 10:45, but I slept through until 6:30 the next morning. A woman I work with asked me why my face was so red and sure enough, my rosacea was in full bloom.
Day Two, got up at 6:30, went to Starbucks for coffee and came back home and went back to bed to sleep until I had to leave for my job at 11 a.m. Still exhausted and achy, still beset with brain fog. I think my adrenals and thyroid are affected as I feel noticeably colder, especially in the evenings when I'm going to bed. I would have moments of feeling like, "Hey, I'm OK, the worms must be doing better" and then feel like I was crashing and had to go to bed immediately five minutes later. I anticipate quite a bit of that in the future. I can feel the squishiness in my tissues on the tops of my arms, below the wrists and towards the elbows. My husband said he can feel it too, but that it's far less severe still than before inoculation.
Today is Day Three and I woke up with some of the generalized anxiety that was part and parcel of life before hookworms. It sucks. I sure hope my twenty-five old friends start feeling a lot better very soon.
As miserable as this experience is, it leaves no doubt for me how much the hookworms were affecting my body for the better. It is the difference between night and day.
I went in for my cleaning and exam appointment and found out I had a huge cavity in my farthest back molar on the upper right side. First I thought I'd get the molars on that side extracted. The dentist wasn't too thrilled about that idea because of my "advanced age" and I was even more concerned about the anesthesia choices. When my provider told me that my worms should be able to survive novocaine, I decided I'd go that route and just have the tooth filled. Skipping anesthesia would be out of the question, given the extent and severity of decay in my tooth.
I hope this account will be of interest to those considering hosting or actually hosting helminths. I have seen no one else actually write of the experience of having a local anesthetic and what it did to their hookworms. The conventional wisdom is that the hookworms will be compromised in their ability to function for as little as four or as much as eight weeks. This account should provide some specifics, though it's still unfolding as I only had the tooth filled three days ago.
The cavity I had was so huge, the dentist spent over an entire hour just drilling the decay out of this one tooth. I was very lucky that the decay was diffuse around the tooth and it hadn't gotten into the pulp chambers, the nerves or the blood supply. It took an additional hour to put the filling in. Fun times!
When the lidocaine wore off, I had pain in my sinus nerves, not the tooth that had been filled.
Day One after having my tooth filled, I felt horrible. Exhausted and achy, instantaneously back to the way I felt all the time before I got inoculated back in the end of June. My ankles and wrists are swelling. My sinuses were painful through my eye teeth on both sides. The exhaustion is unbelievable. No caffeine helped at all, it just makes things worse, a sign of my adrenal fatigue rearing its ugly head. I also felt brain fog seeping back in. I was so tired that I could barely drive home at 6 p.m. and went straight to bed at 6:30. I had to get up and deal with kids from 9:45 to about 10:45, but I slept through until 6:30 the next morning. A woman I work with asked me why my face was so red and sure enough, my rosacea was in full bloom.
Day Two, got up at 6:30, went to Starbucks for coffee and came back home and went back to bed to sleep until I had to leave for my job at 11 a.m. Still exhausted and achy, still beset with brain fog. I think my adrenals and thyroid are affected as I feel noticeably colder, especially in the evenings when I'm going to bed. I would have moments of feeling like, "Hey, I'm OK, the worms must be doing better" and then feel like I was crashing and had to go to bed immediately five minutes later. I anticipate quite a bit of that in the future. I can feel the squishiness in my tissues on the tops of my arms, below the wrists and towards the elbows. My husband said he can feel it too, but that it's far less severe still than before inoculation.
Today is Day Three and I woke up with some of the generalized anxiety that was part and parcel of life before hookworms. It sucks. I sure hope my twenty-five old friends start feeling a lot better very soon.
As miserable as this experience is, it leaves no doubt for me how much the hookworms were affecting my body for the better. It is the difference between night and day.
Monday, July 25, 2011
July 25, 2011, going on the sixth week since inoculation
and I think I've definitely got a touch of the Worm Flu definitely now. Nothing terrible -- more tired and my abdomen has this diffuse pain across it. It comes and goes. It's not unbearable or anything, just noticeable. The pain is what I'd describe as little bursts of intense sensation, almost like sparks of pain, particularly in spots across the underside of my diaphragm. There's a tender spot near my liver and another one on my left side, a little lower. Most of the time I'm not aware of it at all.
I'm still seeing a lot of overall improvement in my physical condition. The biggest one has been how much the swelling all over my body has gone down. It's really remarkable, especially since I didn't even realize before how bad it was, except in my ankles and wrists. My face looks much thinner and I can see and feel bony structures in it I never perceived as being there.
My little girl is not complaining of pain, but she seems grumpier than she's been in the last month and it's been hard for her to fall asleep. This is still an improvement over what her life was like on a daily basis, though. Her anxiety is still significantly lower. It makes a big difference in what our lives are like on a day to day basis.
Another pieces of great news for me has been that my extreme heat intolerance is gone. I learned this last Friday, when the heat index was a crazy 125°F where I live, hotter than I've ever experienced in my life. In Washington, DC, I had to walk about eleven blocks to and from where I'd parked my car and when I got to my destination, I was certainly very warm, but I wasn't about to collapse by any means. Previous summers, I have been extremely miserable in the heat. I used to tend to not perspire at all and now I was perspiring. I take this as an indication that my adrenal glands are doing much better.
I'm still seeing a lot of overall improvement in my physical condition. The biggest one has been how much the swelling all over my body has gone down. It's really remarkable, especially since I didn't even realize before how bad it was, except in my ankles and wrists. My face looks much thinner and I can see and feel bony structures in it I never perceived as being there.
My little girl is not complaining of pain, but she seems grumpier than she's been in the last month and it's been hard for her to fall asleep. This is still an improvement over what her life was like on a daily basis, though. Her anxiety is still significantly lower. It makes a big difference in what our lives are like on a day to day basis.
Another pieces of great news for me has been that my extreme heat intolerance is gone. I learned this last Friday, when the heat index was a crazy 125°F where I live, hotter than I've ever experienced in my life. In Washington, DC, I had to walk about eleven blocks to and from where I'd parked my car and when I got to my destination, I was certainly very warm, but I wasn't about to collapse by any means. Previous summers, I have been extremely miserable in the heat. I used to tend to not perspire at all and now I was perspiring. I take this as an indication that my adrenal glands are doing much better.
Saturday, July 16, 2011
Worm Flu Starts to Set In (maybe?) 26 days past inoculation
After feeling fantastic for a longer period than I can ever remember 16 days in a row? 17?) , I am now starting to feel a bit tired. It might be not getting enough sleep, because I have to get up at six a.m. or earlier every day and I'm not getting to sleep by nine p.m., which would be optimal -- it's more like by 11 or later every day. I feel a bit draggy, but not really bad at all -- just tired. I should get to bed earlier, but life is complicated when you have kids to take care of. I know the worm flu will peak in about 16 days, but I guess it has to start somewhere.
My little girl is doing incredibly well. She is more tired too, but we are thrilled by the changes in her. She doesn't really seem to have any pain at all as opposed to the chronic pain she's lived with her entire life. Her appetite is up. She is very happy pretty much all the time. She told me yesterday, "I'm eating a lot faster, did you notice?" She has always been an extremely slow eater. I weighed her yesterday afternoon and the scale was three pounds higher (48.2) than when we went to CA, less than a month ago. That's not to say she's actually gained three pounds, but the scale was higher than it's ever been and finally higher than it was back in the end of January, before her big EE flare, when she stopped eating and drinking completely because she was in so much pain.
Recently I feel tiny pinching sensations in my tummy right under my ribs. I'm wondering if it's the worms getting settled in. It only hurts a little bit and usually for a few seconds.
The fatigue for me now is really light duty compared to what I've been through in the last eight years. We got our PhDs and post docs in sleep deprivation in our house, thanks to sick kids. You haven't lived as a zombie until you've gone almost a year living on less than four hours a night of sleep to the point of having hallucinations as you sit in a stupor, unable to complete a sentence. So this report on the fatigue is an observation and not even close to being a complaint.
My little girl is doing incredibly well. She is more tired too, but we are thrilled by the changes in her. She doesn't really seem to have any pain at all as opposed to the chronic pain she's lived with her entire life. Her appetite is up. She is very happy pretty much all the time. She told me yesterday, "I'm eating a lot faster, did you notice?" She has always been an extremely slow eater. I weighed her yesterday afternoon and the scale was three pounds higher (48.2) than when we went to CA, less than a month ago. That's not to say she's actually gained three pounds, but the scale was higher than it's ever been and finally higher than it was back in the end of January, before her big EE flare, when she stopped eating and drinking completely because she was in so much pain.
Recently I feel tiny pinching sensations in my tummy right under my ribs. I'm wondering if it's the worms getting settled in. It only hurts a little bit and usually for a few seconds.
The fatigue for me now is really light duty compared to what I've been through in the last eight years. We got our PhDs and post docs in sleep deprivation in our house, thanks to sick kids. You haven't lived as a zombie until you've gone almost a year living on less than four hours a night of sleep to the point of having hallucinations as you sit in a stupor, unable to complete a sentence. So this report on the fatigue is an observation and not even close to being a complaint.
Tuesday, July 12, 2011
Some thoughts and a quick update at the end of Week 3
I had an interesting and exciting thought today -- how much this therapy could potentially help all the people who are practically crippled with the fatigue and malaise of adrenal fatigue and how adrenal fatigue is probably yet another autoimmune disease given that the major treatment (if one can get any treatment) is steroids. Are they replacing the anti-inflammatories the adrenals themselves should be making or are they suppressing the autoimmune disease that's destroying the adrenals? I wonder if we're not seeing a whole new variety of autoimmune adrenal disease, similar to but not identical to Addison's to join all the other up and coming forms of autoimmune pathology. I also wonder that Addison's is only diagnosed when virtually all function of the adrenals is gone whereas most autoimmune disease is chronic and progressive over many years. Most autoimmune disease doesn't see the complete destruction of the affected organ instantaneously. Even in Type I diabetes, some pancreatic function can be preserved if it's treated in time and it takes considerable time for the complete loss of insulin production.
I am still feeling pretty darned good, which is a huge improvement over three weeks ago. I'm more tired than I was a week ago, but my productivity is pretty good and I slept very well last night, not really waking up to check the clock even one time. I made a laundry list of symptoms I've been dealing with for a long time and all of them are better, three weeks into this experiment. My heat intolerance is much, much better as I've noticed in the 100F+ temps we had yesterday and today. I'm waking at six a.m. now to get my son on the school bus for summer school and it's a lot easier than back on June 17. I've had very minor transient abdominal pain that sort of felt like a pinching sensation that only lasted for a few minutes.
My daughter is doing very well. She said she's more tired than usual, but she's sleeping better and her overall mood is greatly improved. We see a significant decrease in the anxiety she has to deal with all the time. I can hardly wait for the next nine weeks to go by for her to be able to trial some foods.
I am still feeling pretty darned good, which is a huge improvement over three weeks ago. I'm more tired than I was a week ago, but my productivity is pretty good and I slept very well last night, not really waking up to check the clock even one time. I made a laundry list of symptoms I've been dealing with for a long time and all of them are better, three weeks into this experiment. My heat intolerance is much, much better as I've noticed in the 100F+ temps we had yesterday and today. I'm waking at six a.m. now to get my son on the school bus for summer school and it's a lot easier than back on June 17. I've had very minor transient abdominal pain that sort of felt like a pinching sensation that only lasted for a few minutes.
My daughter is doing very well. She said she's more tired than usual, but she's sleeping better and her overall mood is greatly improved. We see a significant decrease in the anxiety she has to deal with all the time. I can hardly wait for the next nine weeks to go by for her to be able to trial some foods.
Monday, July 4, 2011
July 4, 2011 - I declare independence from my hyperimmunity!
Today is a great today. I was inoculated with twenty-five hookworms two weeks ago today and for the last five days in a row, I have been feeling totally fantastic!
This might not sound like a big deal but I have not had three days in a row of feeling terrific for decades. The only time I've felt what I used to think of as "normal" was when I was starting a course of prednisone and I'd catch one day of feeling really well on Day 1/2. To feel this good for five days in a row is just unprecedented. I haven't felt this well since around my twelfth birthday, which was when my allergies really kicked in. It's been a long litany of allergies, sinus infections, asthma and migraine headaches.
It's also remarkable because the last few weeks before we took our trip, I was so exhausted that I could barely function. I felt like getting to San Diego was the finish line of a race that I'd been running for decades. No amount of sleep made it any better.
It's really hard to know exactly what mechanism is in play, since I couldn't actually get any physician to figure out what was wrong with me. I suspect that my adrenal glands are finally getting a break as well as my general hyperimmunity that was attacking many different systems in my body. The degree of swelling all over my body but particularly in my face, wrists and ankles is markedly less. My husband says my body feels much less spongy. My allergic shiners are no longer bright purple.
My daughter is doing very well too. Most remarkably, she's having a hiatus from her constant generalized anxiety. We're not doing anything with increasing her food repertoire yet, but she's asked me if getting drowsy around 8:30 p.m. is how "normal" people feel. I'm very hopeful that she's going to be eating more real food in a couple of months.
This might not sound like a big deal but I have not had three days in a row of feeling terrific for decades. The only time I've felt what I used to think of as "normal" was when I was starting a course of prednisone and I'd catch one day of feeling really well on Day 1/2. To feel this good for five days in a row is just unprecedented. I haven't felt this well since around my twelfth birthday, which was when my allergies really kicked in. It's been a long litany of allergies, sinus infections, asthma and migraine headaches.
It's also remarkable because the last few weeks before we took our trip, I was so exhausted that I could barely function. I felt like getting to San Diego was the finish line of a race that I'd been running for decades. No amount of sleep made it any better.
It's really hard to know exactly what mechanism is in play, since I couldn't actually get any physician to figure out what was wrong with me. I suspect that my adrenal glands are finally getting a break as well as my general hyperimmunity that was attacking many different systems in my body. The degree of swelling all over my body but particularly in my face, wrists and ankles is markedly less. My husband says my body feels much less spongy. My allergic shiners are no longer bright purple.
My daughter is doing very well too. Most remarkably, she's having a hiatus from her constant generalized anxiety. We're not doing anything with increasing her food repertoire yet, but she's asked me if getting drowsy around 8:30 p.m. is how "normal" people feel. I'm very hopeful that she's going to be eating more real food in a couple of months.
Monday, May 16, 2011
The journey of a thousand miles starts with a single step...
Today, I went and saw Dr. C who will be supervising my treatment with helminths.
If you, Dear Reader, are like most people, then you must be wondering what kind of freaky weirdo I am that I would consider voluntarily becoming infested with a parasite. It's such an extreme and horrible idea, especially for Americans who are engaged on the path of trying to live in an abiotic world.
If having parasites seems extreme and horrible, then consider the idea of never eating food ever again. This is where we are at with my eight year old daughter. She has a supposedly rare disease called eosinophilic esophagitis. It's an autoimmune disease where the cells of her esophagus are attacked by her own blood cells, called eosinophils. It's extremely painful and debilitating and the treatment is not eating foods to which the body reacts. For my daughter, that is most foods. She is down to eating next to nothing, only soymilk pancakes with soymilk to drink. She is extremely thin and barely growing, weighing 46 pounds now at eight years and three months of age. She has tested positive for about 18 common foods, but beyond that, she is reactive to many, many more and simply will not eat them. The lives of everyone in our family are profoundly affected by her disease. We have explored the research on helminths and are pursing treatment for her. I was thrilled to find out I could be treated too on the same trip.
My husband and I are both people with severe allergies. I am very allergic to trees and grasses and to a lesser extent dust and mold. He is extremely allergic to dust and mold primarily and also trees and grasses. I get severe reactive asthma and non-stop sinus infections from my allergies. I have been on prednisone for months at a time. I am now at the point of being sick pretty much all the time. I have no energy from my body fighting off dust, mold, and pollen. I take medication 365 days a year and I am not well, despite it. I have gotten worse and worse for over 30 years now. I cannot cut grass or garden in the spring, I cannot have windows open, the tissues of my nasal passages are swollen shut permanently. I now have horrendous migraine headaches.
If you, Dear Reader, are like most people, then you must be wondering what kind of freaky weirdo I am that I would consider voluntarily becoming infested with a parasite. It's such an extreme and horrible idea, especially for Americans who are engaged on the path of trying to live in an abiotic world.
If having parasites seems extreme and horrible, then consider the idea of never eating food ever again. This is where we are at with my eight year old daughter. She has a supposedly rare disease called eosinophilic esophagitis. It's an autoimmune disease where the cells of her esophagus are attacked by her own blood cells, called eosinophils. It's extremely painful and debilitating and the treatment is not eating foods to which the body reacts. For my daughter, that is most foods. She is down to eating next to nothing, only soymilk pancakes with soymilk to drink. She is extremely thin and barely growing, weighing 46 pounds now at eight years and three months of age. She has tested positive for about 18 common foods, but beyond that, she is reactive to many, many more and simply will not eat them. The lives of everyone in our family are profoundly affected by her disease. We have explored the research on helminths and are pursing treatment for her. I was thrilled to find out I could be treated too on the same trip.
My husband and I are both people with severe allergies. I am very allergic to trees and grasses and to a lesser extent dust and mold. He is extremely allergic to dust and mold primarily and also trees and grasses. I get severe reactive asthma and non-stop sinus infections from my allergies. I have been on prednisone for months at a time. I am now at the point of being sick pretty much all the time. I have no energy from my body fighting off dust, mold, and pollen. I take medication 365 days a year and I am not well, despite it. I have gotten worse and worse for over 30 years now. I cannot cut grass or garden in the spring, I cannot have windows open, the tissues of my nasal passages are swollen shut permanently. I now have horrendous migraine headaches.
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