I am 53 years old and live in Western Australia.
Rheumatoid arthritis in childhood and persistent pain in adulthood
As a child, I had juvenile rheumatoid arthritis that affected my knees. This cleared up after a couple of years and it was only many years later, when I was diagnosed with autoimmune problems, that I realised that juvenile RA was an autoimmune condition.
Since my 20s I have had lumbar spine pain, which I assumed was residual damage from kick-boxing, being in the army reserves and crazy horses. I can work through any discomfort and pain, but, as the years passed, in spite of being sporty, gymnastic and keeping fit, I became unable to sleep on my back due to this pain in my spine.
As I got older (30s), I also started to get pain in the pit of my stomach, in spite of always eating healthily. I was living in London by this time and my work was stressful, but there wasn’t much I could change in my diet/lifestyle, so my GPs prescribed reflux type medications. Unfortunately, these were never effective, and I didn’t actually have reflux symptoms, just this terrible, very severe, stitch-like pain. As more years passed, I became unable to sleep on my left side due this pain in my gut. It felt like I had been punched in the stomach and winded, and it never responded well to medication.
I remained active however. I married and moved from the UK to Australia where I ran my own business, worked my dogs (Rottweilers) and was even doing aerial silks at 50 so was very fit for my age. The pain was still there, but I just worked through it.
The menopause brings even worse pain and other issues
Once I hit the menopause, the pain started to go through the roof. I developed eye problems, with inflammation causing multiple meibomian cysts in both eyes, and rashes all over my body.
This photo shows one of my eyes at its worst. The problem, which was the only visible sign that something was amiss with my health, went from one eye to the other and back again for at least 14 months. The whole side of my face was swollen, although the eye itself wasn’t always quite as bad as is shown here.
The pain in my spine branched out and spread around my body and to my limbs. The worst of it was in my right shoulder and neck, which completely screwed up any hope I had of getting an hour or so of sleep. Not sleeping just made everything worse. The fatigue was weighing me down and the brain fog was causing me to struggle with work. I began to worry that I was getting Alzheimer's because I couldn’t retain anything. You can understand why people with chronic pain become depressed! I was unable to work out and falling into the trap of not moving to avoid the pain which just made everything worse, and I started to put on weight. I didn’t feel like myself anymore.
I have seen many GPs through the years, plus chiropractors, physios and osteopaths. I have had gastroscopies, x-rays, scans and MRIs to try to get to the bottom of the pain. I sat crying with my GP when my MRI came back and she said that I would just have to learn to live with it as my spine looked really good for my age. I still looked healthy (at least when my eyes weren’t inflamed) and in good shape for my age. I was fobbed off and told it was the menopause affecting my ability to think and retain information. Anti-inflammatories and pain killers were prescribed but they didn’t touch the pain in my spine, limbs, shoulder and stomach. I felt like a hypochondriac and a complainer, but I am actually quite tough and can tolerate a lot of pain. I didn’t want to be sick, and I’m not inclined to be depressed either. I tend to think most problems can be solved eventually. I am a realist but also optimistic and determined.
I changed GP, and it was actually a nurse who asked me if I had ever been tested for autoimmune issues. I mentioned this to my new GP and finally things started to make sense. By this time I was having stabbing pains in my muscles all over my body, aches, cramps and ringing in my ears. My joints were so painful and my right shoulder/arm/neck had reached the point where I felt like someone was drilling into my shoulder during the night. It was a vibrating pain that was just unbearable and ran right down my arm. I couldn’t stand up in the morning. I couldn’t walk. My legs were stiff and my back was bent like an old lady. I had stiffness throughout my body. I told my husband that I just couldn’t see myself getting older like this. My new GP prescribed prednisolone and, although I really didn’t want to take it, I did because I felt so bad.
Prednisone provides welcome relief and the worms begin their healing
Exactly 22 hours after starting the prednisolone, my body was ‘quiet’ for the first time in years. The ringing in my ears stopped and I could just stand up - no problem. It was like a switch had been flicked. I did Pilates straight away as soon as I could move.
The rheumatologist I was referred to couldn’t explain some of my symptoms, particularly the stiffness. He ran lots of tests but couldn’t reach a firm diagnosis. Although I have autoimmune markers, he couldn’t put a label on it. He looked quite disappointed! Being on the cusp of rheumatoid arthritis or ankylosing spondylitis was the best he could come up with, and he wanted to adopt a wait and see approach. If this was the cusp, I really didn’t want to wait to see what might happen next. I was already in terrible pain but I didn’t want to damage my body with the standard medications on offer. That’s when I started to research helminthic therapy, having remembered reading something about it many years ago.
I am not at all squeamish and have a lot of faith in mother nature. After talking things through with a helminth provider, I took 10 Necator americanus (NA) hookworms. I took no medication, just upped my vitamin D and B. (I have always taken lots of supplements - trying everything to relieve the pain.) The only side effect I experienced was that my stomach felt bloated and I had increased pain in the pit of my stomach - a bit like a trapped wind pain. That was uncomfortable but totally manageable. I didn’t have much in the way of a hookworm rash either. I did feel a boost a few weeks after the worms went in, and certainly had more energy for a while.
As I am in Australia, where our quarantine laws are tight, I have started incubating my own hookworms to make certain there are no interruptions in supply. This has also meant that I can now add them more regularly, in smaller quantities, and I think I have inoculated with about 40 over a 10 month period. I should have noted down how I was feeling along the way, but I think the back and stomach pain resolved within a couple of months. I had one hiccup in that it turns out I have fibromyalgia as well as the other issues, which probably accounted for some of the muscle pain and certainly the stiffness, particularly in the hands, and the pain in my shoulders and neck. Perhaps also some of the ‘brain fog’? Amazingly the rheumatologist knows nothing about this condition. It’s outside his ‘box’! Maybe by stripping away the autoimmune problems the fibromyalgia has become more apparent?
Remarkably, the pain in my lumbar spine that has troubled me since my 20s has COMPLETELY resolved! I am amazed by this. I haven’t been able to go to the cinema or go to dinner at friends’ houses because the pain would get too much when sitting around, and yet it has now completely gone. The pain in the pit of my stomach has also COMPLETELY GONE. I have even been able to have a glass of champagne without any discomfort. I can’t remember the last time I was able to do that! And I can now sleep on my left side. I think a knock-on effect to not being able to do that for so many years is that my gall bladder is full of biliary sludge, possibly exacerbated by the useless calcium carbonate-type reflux medication I have taken over the years. I was reading about yoga positions to help empty the gall bladder and they involve a lot of stretching and lying on the left hand side (in case you are wondering how I came to link the sleeping on the left hand side with gallbladder issues). Funny how one condition can have a knock-on effect on another!
Freedom from pain, and a new perspective
After all those years of suffering, I feel very let down and annoyed with traditional medicine. I have mentioned not being able to sleep on my left hand side to so many GPs over the years and they would just look at me... blinking... the clock ticking in the background as I waited for a response, but no one has been able to offer an explanation for this, or a remedy, apart from the suggestion to take reflux medication. They have not even been able to stab at a guess as to what was causing the pain.
I can’t explain how or why the hookworms have stopped the pain, but they have, and completely. I still have fibromyalgia pain at the moment and I am taking 30mg of duloxetine for that. It actually takes 60mg to cover the pain, but the side effects were too bad. It dried my skin and eyes up too much (and I don’t want to start with eye trouble again) so I take 30mg and have acupuncture (which works!) and I’m feeling more normal than I have for years. I aim to reduce the medication gradually over the next few months and see how I go. I still have stiffness in my hands that I haven’t been able to get rid of yet, but everything else seems pretty good. My brain is back to normal, thank goodness, and my energy levels are up. I’m not sure why hookworms sometimes make fibromyalgia worse, but, although painful (it’s like someone has a voodoo doll and decides what type of pain to give you each day), it apparently doesn’t damage joints or organs like rheumatoid arthritis does. And it’s not a terminal illness, so I can cope with it.
My GP knows about my hookworms and she is OK with this. We actually looked at the wiki together. It was all new to her. My acupuncture lady is gorgeous and really excited about it, and tells those of her patients who she thinks might benefit. She’s in a difficult position since they are so highly regulated in this country, but she loves the whole idea of it and asked for more information.
I tell most people about my hookworm journey and frequently share information with people, the wiki page and the Facebook group details. I never realised how many people are suffering from autoimmune diseases, and these are just the people who have been diagnosed. Of course, lots of people think I am nuts, but I am known as a rational, pragmatic person who people turn to for advice. I just also happen to be quite adventurous and I am discovering that a lot of people are not!
Here’s to the little wiggly guys, and I just hope more people are willing to take the step to help heal themselves naturally.
By Paula Garnham, Dec 2019.