I reinfected with 10 worms about 10 weeks ago, and this time, side effects have been bad. Not as bad as the first time, but worse than February, when I was hosting no worms. Seems if there are worms in me, then reinfection somehow is worse. This was similar last year.
The short list of suffering? My joints hurt. This time in my hands, hips, and ankles. My muscles are sore. And not from activity. My nerves hurt. At times they burn, other times just sore to the touch. I am slightly dizzy at times. My lips are tingling, hands and lower arms sometimes go numb. I’ve had terrible anxiety and depression, which caused insomnia, somewhat managed by Celexa and Ambien. Not sure whether to blame that on the worms or just the fear of the symptoms they cause, or just the hell of the last few years. Sometimes my head tingles. My muscles are twitching. All over, jumping around.
In February the nerve stuff got so bad that I went to a neurologist at UCSF who ran a brain MRI and nerve conductivity test. The good news, is they came back normal. I had had a bunch of iron shots then to correct longstanding iron deficiency, and I blamed the “neuropathy” on that, but this time, nothing has changed but new hookworms. The same thing happened last year, but I had a few iron shots then, so couldn’t be certain what was what.
I had a kind of similar thing happen a few months after being on LDN, but it was more acute and included a rash all across my bottom, so we concluded I had grown allergic to sulfasalazine which I was also on. I stopped the sulfa, but then flared and had to stop the LDN, so I never learned the cause. Later, I went back on LDN for a few months and it didn’t happen.
So I have to conclude these are all worm side effects. In the Spring, it slowly got better, but by summer I was still twitching and that’s when the anxiety began. But as the symptoms got better, the Crohn’s got worse. Last year, the symptoms completely resolved when I lost my worms.
So Crohn’s disease or nerve/muscle/arthritis weirdness? I truly am hoping it’s a temporary reaction and then the immune system settles into a comfortable happy medium. Throughout this year, my blood tests have been mostly normal; no markers of inflammation, so whatever is going on, if it is inflammatory, isn’t registering on the CRP and ESR scale.
Interesting that the House episode included tetany as one of his presenting symptoms, but I got scared watching that, and didn’t see past the first 10 minutes, and my husband forbids me to see the rest insisting I can’t get clues from a House episode, but wonder where the tetany as a symptom of liver worms came from?
One other patient with a host of autoimmune diseases is 3 months into his worm infection, and has similar side effects – he had just calf twitching and is now twitching all over, has bad joint pain, and some dizziness. I don’t know about the nerve issues.
This is one of the bad things about not going through a study. We have no idea of the numbers of responses, how often this occurs, or why.
I’ve had Crohn’s disease for 21+ years and have never had arthritis, nerve pain, muscle pain, or dizziness in my life. So I can’t attribute it to that. The only extra-intestinal manifestation I’ve had was a skin condition that happened once, after putting some chemical with skull and crossbones on my fingers, and I still have scars from it. erythema nodosum. I was a nanny in Ireland at the time and it took months to abate. That was lovely.
So it’s not all – take worms get better. Suffer temporarily. The suffering seems to come with each infection, and lasts for months. I’d kill the worms and see if it all goes away (as my Crohn’s worsens) but without a source, I don’t dare. And I’m 10 weeks in, with the hope it will abate in the next 2 months. I don’t want to start over.
Definately not a bed of roses.
And I’ve still got a lovely miscarriage in front of me, the bleeding of which has just gently started.
When do the good times begin? I ate Thanksgiving food at least, with real bread stuffing for once in a decade. But I still had gas.
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For what it’s worth, all of the side effects you describe occur quite commonly, together, without worm infection. About two years ago, I went through an awful period of really high anxiety, depression, frequent muscle twitching throughout my body (fasciculations), sore finger joints, painful and sore muscles (without exertion), dizziness, sensitivity to bright lights–my Crohn’s symptoms seemed to stay pretty much the same, if slightly worse. Doctor had me try an SSRI (lexapro) which made things exponentially worse. I tried a few other anti-anxiety/depression meds with similar results, so I gave up on anti-anxiety meds. The only thing I found was that all of these symptoms are associated with magnesium deficiency, and in an unfortunate cycle, high anxiety causes your body to shed magnesium (as does diarrhea as it is water-soluble ). Anyways, for me good quality magnesium supplementation plus lowering anxiety was the only thing to bring down the other symptoms. Although taking too much magnesium can induce diarrhea. Of course “lowering anxiety” is no small feat, but the more drugs I tried the worse off things became. Although, SSRIs can be helpful for some people, at least short-term. I have no idea if your symptoms are related to the hookworms, but they certainly can happen without them. I guess that’s my point. From my experience the symptoms seem mostly tied to prolonged anxiety and the related issues with magnesium. I have not done helminthic therapy, although plan to soon. In any case, it’s a difficult situation to try to work with, and I hope you find something that works for you.
I’m exploring the magnesium angle and have thought this for some time, since I had diarrhea for years before trying hookworms and still go at least 3 X a day, often loose. I know I have low D and most people with Crohn’s with prolonged diarrhea have low calcium and magnesium.
I’ve had a few magnesium infusions; the first one seemed to help. I’m also up to 400 mg. of magnesium glycinate a day. How much magnesium did you need to take a day and for how long before you started to get relief?
I wonder too if my 3/4 colon contributes. Not as much there to absorb.
For me, Lexapro made things terribly worse. Instead, I tried Celexa, and introduced it in 2.5 mg. increments. The standard dose is 20 mg. So I tried 2.5 for 5 days, adding 2.5 mg. at a time. I stayed at 10 mg. for 10 days. This slow taper worked, and I definately feel happier; the anxiety is substantially reduced but not gone.
Each time I redosed with hookworms I had something else happening; iron shots. This time, a pregnancy, now a miscarriage. I imagine the anxiety and the pregnancy used up magnesium as well.
Anyway, thanks for your comments. I’m going to continue the magnesium infusions when I heal from this miscarriage and try to add to the oral and see what I can tolerate. I truly hope this is all it is, but I imagine it will take time to correct.
I have had success with Natural Vitality’s ‘Natural Calm’. It is labeled the anti-stress drink. When combined with water it becomes magnesium citrate. When I have stress or leg cramps I make it and it works within seconds. Really I mean literally less than a minute I can feel the stress and or cramps leaving my body. You can get small sample packets for less than a dollar at any health food store. I am not associated with the company, I only use the product. Here is the link: http://www.petergillham.com/product-line/index.php
I hope this helps you. Thank-you for your blog.
At first I had a lot of difficulty trying to figure out the efficacy of taking magnesium, as I did not take it steadily at first. When I had a rise in symptoms and anxiety, I’d start taking it again, and notice little difference. But given that high stress/anxiety depletes your body of mag, its not surprising that any extra magnesium I was taking was not helping. Only after being able to manage the anxiety (which took a major life change) did I then find magnesium to be helpful in helping relax stiff muscles, pain and twitches. God the twitching-fasciculations were the worst! Annoying and insomnia-inducing.
I do think taking magnesium is helpful, but is probably of little worth without substantially lowering anxiety or depression levels. Of course having those annoying symptoms made me more anxious and worried with the “whats wrong with me’s.” It’s a vicious cycle. Given your miscarriage on top of everything, I would imagine you’ve been under quite a bit. I think if your anxiety is substantially reduced with Celexa, great, then continue with that and add in magnesium, and in a month or two you should probably have lessening of your symptoms. Then hopefully you can give your little hookworm army a chance to get you immuno-balanced, and presto, life will be good. Right?
I took 400mg magnesium (sometimes slightly more), alternating between liquid magnesium citrate and magnesium asporotate (a blend of different forms). It did take about a month or two to see significant improvement in the muscle symptoms, and has been great for muscle-tension related headaches. But again, this was after I was able to break out of the anxiety rut I was in. Of course it’s still a work in progress.
Just want to add that I’m now doing transdermal magnesium; took magnesium chloride and dissolved it in water, then soak my feet in it once or twice a day and rub it all over my legs, behind my knees, on chest. That, and I switched Vit. D supplements and am taking 8000 IU, broken up twice a day. I’m also taking 400 IU of oral magnesium. WITHIN A DAY the anxiety has gone. Too early to hope, but I’m also in my PMS week where it should be its worst. I also added Vitex, an herb that’s supposed to balance hormones 3 weeks ago. But I think the transdermal magnesium was key. I’ll see how it goes over the next month. For those with IBD who have loose stools anyway, soaking through the skin is the best way to absorb magnesium it seems and gives very quick results. (Unless it’s the D too.)
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