I’m going to be discussing specific treatments and medications. These things are working for me, they may not work for you for a whole bunch of reasons- even if we have the same symptoms or diagnosis. Also, this is a bit of a ramble...
I recognise that I have a great deal of privileges, and that getting this treatment is a direct result of some of those privileges. Sheer dumb luck was also a factor, well you could call it luck or divine intervention or karma or...magic, but a string of circumstances led me to this treatment that it would be unrealistic to expect to replicate. I’m incredibly grateful for the people who enable my treatment, I will never be able to repay them.
A lot of these treatments are herbal, some of it is a little woo-woo, some of it is traditional western medicine. I’m not going to be talking about dosages or brand names, but feel free to ask if you’ld like more info.
This treatment has made a huge difference, but I am cured. I’m still in constant pain, still exhausted and fatigued, still wobbly and wonky. Some things can be cured, some treated, and some simply managed. I highly doubt I will ever be cured, things like the structural abnormalities of my knees and hips will not disappear, but that’s honestly okay for now.
I have the following official diagnosis - Fibromyalgia, PCOS, TMJD, Chondromalacia patellae, Heart Palpitations, Vitamin D deficiency, Hereditary hip malformation and some other stuff that’s not relevant.
It’s suspected that I have these diagnosis, but they’re not willing to say it officially - Hypermobile EDS, PoTS, chronic migraines, thyroid issues and some other stuff that’s not relevant.
A friend of a friend of a friend’s sister works at Utah Valley Health Clinic, at some point in 2015 I received a mould treatment in the mail from America. My friend had been talking to her friend about the woman’s son, he was particularly ill with Lyme disease and hadn’t been treated very well with traditional medicine so she had taken him to UVHC. The treatment he received there changed his life, and his medical situation was greatly improved. This got my friend wondering what else they could do, she knew most of the ins-and-outs of my health problems and so, with my go-ahead, began to discuss treatment options that could work without me physically being there. The Clinic nurse decided that mould treatment would be the best way to go, something simple that’s often overlooked, could make a big difference and wouldn’t harm me if it wasn’t something I needed.
The course of treatment contained vials and tablets that would treat a generic mould infection. Once I finished the treatment, I was able to stop using my forearm crutches on a daily basis, using them only for big trips or on bad days. This in itself was a massive deal for me, when I was first beginning to get sick I couldn’t even stand without unbearable pain.
We were all amazed at the outcome and we discussed how great it would be if I was able to go there one day. Don’t get me wrong, I was terrified. Scared of the change, scared of getting my hopes up, scared of disappointing people...I’m still scared to be honest.
This Autumn I made a trip to Utah, not specifically to go to UVHC, but it was part of the plan. The aforementioned friend gave up her appointment, one she’d waited for months to get, so that I could see the nurse. A few days before the appointment I had an emergency root canal, which I won’t go into detail about as all you need to know is that the anaesthetic didn’t work and the placement and shape of my jaw was a big problem. It was one of the most traumatic and painful experiences of my life.
I had never used anaesthetic before, but I knew that anaesthetic failure is common with EDS, so I did warn the dentist. He was lovely, he constantly apologised for the 4 plus hours I was in his chair. I watched Moana and The Theory of Everything - that’s not relevant.
UVHC is a small clinic in Utah Valley, USA in a picturesque red brick building across from a restaurant that makes really good sandwiches. There are signs on the door and inside asking clients to not wear strong perfumes or bring heavy chemical scents into the clinic. Inside there are wooden children’s toys, magazines and glass display cabinets full of herbal remedies and this season’s cold remedy. I didn’t buy a cold remedy, I got a cold within days of being home. The clinic were happy to let my friend pay for my treatment, I was less happy about this but, experience told me that arguing wouldn’t get me anywhere and, besides, I couldn’t afford it on my own. I don’t remember the exact costs, but my monthly treatments are currently around $500 and the clinic will accept some insurances.
There’s a similar clinic in Belgium that the Dr at UVHC works with, I can give you the details if you’ld like to contact them.
After filling out a thousand pieces of paperwork, and ticking off practically every symptom box they had, I met with the Practitioner and invited my friend into the room as well. On the paperwork I had only given information about my official diagnosis, nothing about EDS or anything like that. Brace yourself for the woo-woo up ahead. I have no information about the science behind this so I’ll just tell you that the testing consisted of my holding a copper pipe in one hand a small metal rod being poked and prodded along my hands and feet in line with a series of questions. A computer showed some charts and the Practitioner interpreted the lines into treatments I needed. After we talked for a little while about my life, the Dr came to sit with us. Now, the Dr is a traditionally trained and certified prescribing Dr, but the practitioner isn’t traditionally certified and cannot prescribe or diagnose. They do not diagnose anything, they can say that you need the treatment for XYZ, but not that you have XYZ.
The Doctor found me fascinating, as did the Practitioner, being British in America is endlessly entertaining. They also found my whole medical story fascinating, the lack of help and treatment appalling, and the medications I had been taking at a young age shocking. Prior to this appointment I had taken myself off all of my prescribed medication, carefully and slowly, as I was tired of side effects and little profits, but I was taking antibiotics for the root canal infection and had been prescribed strong painkillers.
(Do Not Do This Without Seeking Professional Advice)
During the conversation, I mentioned the anaesthetic failure, my frequent subluxations and other symptoms. I did not mention EDS. The Dr told me he had recently been studying a new condition, that he thought I might have, but he was unable to say the name properly. Something like El-Hairs. He was surprised that I could not only pronounce Elhers-Danlos, but that I knew so much about it. Again, he could not diagnose me, but we agreed that we would include the EDS treatments he had been studying. He was heartbroken that I lived a life so full of pain for so long that I was completely desensitised to pain.
Over the next few appointments and treatments at the clinic, I spoke more with the Dr and built a great relationship with all of the staff, and several visitors at the UVHC. The first question on the pre-appointment paperwork is ‘What would you like from this appointment?’, my answer was ‘Not to be dismissed. To be respected and for my problems to be recognised. Lower daily pain.’ That’s all I wanted. All I dared myself to hope for. Less pain and less ignorance. Both of those goals were achieved.
Some of these treatments are short time, some a one off and some long term. Forgive me for not knowing the exact purpose for all of them, there’s a lot! I can give brand names and more info you get in touch. I’m terrible at taking medications at the correct times, I always have been, so these treatments haven’t been able to do their job optimally and that’s on me. I’m working on it.
-High-dose Vitamin C. This is something that’s being suggested and trialled for EDS across the world recently. There is an injection version, which can’t be diluted much and burns like you imagine citric acid into your body feels like because that’s what you’re doing. The IV version is diluted and mixed with other helpful vitamins and is only an uncomfortable pain. The current thinking is that it will take years of treatment to have any significant difference in cartilage, but that other symptoms such as fatigue and scarring will react sooner. I have noticed a difference in the amount of scarring I get from tiny scrapes, wounds healing faster and generally more energy. I also take a daily high-dose liquid Vitamin C supplement.
-Another round of mould treatment. The suspicion is that this is from a childhood spent in chicken sheds and a little while living in dampy old flats. These are vials taken orally every three days until finished and large capsules taken several times a day.
-Lyme treatment. When investigating my health before the fibro diagnosis I was tested for Lyme and told I didn’t meet all of the criteria. This is very common, even some Lyme is enough to make you ill. Meeting 80% of the criteria, still means you have Lyme to a degree. These are vials taken every three days, through several courses until finished, herbal drops and a series of tablets. There may be more treatment in the future.
-Estrofactors. PCOS has meant that I’ve been unable to conceive, my doctors have never offered me treatment of any kind. I was told it would require intense medical intervention and probably not succeed. I’ve never been offered help for the symptoms either. These are large herbal tablets, taken several times a day. Since taking these I have had more regular periods of less severity and milder cramps. I haven’t noticed any difference in other symptoms.
-Protein digest. The gluten, wheat and dairy intolerance diagnosis I was given as a child has never fitted. Soy milk and wheat free bread has never made a big difference, nor did Lactase enzymes. Apparently I am not intolerant to these things, I can’t digest protein. When taking these tablets before meals, I do not experience severe cramps or diarrhea. I can immediately tell if I miss a dose as any food causes awful trapped wind in my shoulders and ribs.
-Magnelevures. A Magnesium supplement that tastes absolutely vial. Designed to aid magnesium absorption which is good for nerve and muscle pains. I honestly struggle to take this one the most.
-Probiotic. Only for use while I was taking antibiotics for the infection in my root canal.
-A water supplement designed to relieve headaches by optimising the hydration of the small amount of water I drink a day. I find it incredibly difficult to drink more than 500ml a day, on average I drink around 300ml. When I really put my mind to it, usually when I feel pressured by other people noticing I don’t drink, I can drink around 1L. I’m constantly dehydrated, which definitely contributes to my migraines.
-Vitamin D topical ointment. This stuff. Wow. After 1 day the psoriasis on my foot, which was horrendous after the dry Utah climate, was smooth and unbroken. When used daily, the ointment keeps the patches soft, not bleeding or weeping, less scaley and much less itchy. If I miss a day, it’s very quickly back to dry and cracked. I’m also Vit D deficient so, it can’t hurt to have more anyway.
-Iodine drops. For the undiagnosed thyroid issues that almost every doctor I’ve seen has suggested and done nothing about.
-Oxytocin. Not to be confused with Oxycontin, the high strength opioid. Oxytocin is a somewhat traditional treatment for neurological pain. I had root canal surgery the day before, I was in Pain with a capital P. The Dr gave me a high strength injection of Oxytocin and I didn’t need to take any painkillers for 5 days. I now have a nasal spray that I can use at my own discretion under his directions. It doesn’t get rid of all my pain, there’s still a constant pain but the peaks are gone. If they do flare, the spray works quickly and wonderfully to dull them down to a more bearable level. I love this stuff.
-A Detox foot bath. Claimed to pull impurities out of the soles of my feet, if nothing else it was cool to see the water turn all kinds of gross colours.
-Grounding. I was advised to spend more time outside, barefoot. Unfortunately I live in England and it’s way too cold to spend the recommended 9 hours outside, especially barefoot. I have made more of an effort to be outside and away from screens.
I have sheets and sheets of test results if you’re interested in that sort thing, detailing exactly which mould strains I have and research on the use of Oxytocin.
The takeaway is that I felt comfortable enough to get rid of my mobility aids, I’m having much fewer debilitating migraines, my general energy levels are higher and my general pain levels lower. I don’t know how long this will last for, but for right now I’m embracing it.