In my last post I felt disappointed and alone again after my follow-up appointment. After waiting 5 months since being tested at UCLH in London, my follow up finally came round. But it was very brief, felt generic, and didn’t discuss what could be underlying my dysautonomia. There’s no treatment available for at least for the next few months.
It’s important for me to know what the most likely driver of my dysautonomia is. If the driver is a progressive, underlying autoimmune condition, then we need to consider starting treatment for it.
So, I’ve taken matters into my own hands again 😉 Let’s work out what the underlying cause is most likely to be…
Underlying conditions
From my limited understanding, the dysautonomia is probably not caused by my multiple sclerosis (MS). I think if MS was the cause, it would show up as primary autonomic failure. . My neurologist also tells me that the location of my lesions does not tally with autonomic issues.
So what is left?
It’s possible that the dysautonomia is due to simple blood pooling as a result of my connective tissue disorder, hypermobility spectrum disorder (HSD). My stretchy collagen means stretchy blood vessels, including those in my legs. This makes it harder for my body to pump that blood back up to my torso and brain.
This has never sat well with me well. It doesn’t seem to explain the vast symptom set that I get, or my particular triggers. It also doesn’t seem to explain why the severity of dysautonomia suddenly shot up in 2015. It hit me like a brick.
So how to rule out another autoimmune condition which, given my and my family’s history, could be driving my dysautonomia? I think the most likely autoimmune conditions are Sjogren’s – the second most common cause of dysautonomia – or celiac disease.
A chat with a rheumatologist
I managed to get an appointment with a superb rheumatologist last week. And he practices from a hospital just down the road from me! WINNER.
I wanted to talk through whether it’s worth ruling out Sjogren’s, celiac disease, and anything else that his expertise flags up.
The appointment was a joy. He’s one of the good ones, and is also up to date with the latest research and testing. And he was such a great listener and provided me with so much validation, which is rare. He really understood the ‘work’ that goes into managing complex health conditions and how disabling the invisible symptoms can be. I was so relieved and happy I could’ve cried.
He was on board with ruling out these potentially progressive conditions to make sure we are not missing important treatment.
The plan with my rheumy
We now have a plan:
- I am going to be tested for Sjogren’s by using a lip biopsy. My Sjogren’s antibody panel came back negative, but this happens in 40% of people who actually do have Sjogren’s.
- I am going to be tested for rheumatoid arthritis, via an ultrasound of my hands
- To cover all bases, we are repeating the immunoglobulin bloods and some other autoimmune bloods that I had done back in 2017.
If these tests all comes back as negative, then there are 2 possibilities left that we both believe are the most likely causes of my dysautonomia:
- Celiac disease. Unfortunately, there still isn’t an accurate test for Celiac. The blood test can produce false negatives. Also, you need to eat gluten every day for at least 6 weeks before having the blood test. I don’t particularly want to start eating a lot of gluten again. The other avenue is taking a biopsy by doing an endoscopy. I don’t think I can have this procedure done unless I’ve had the blood test while eating gluten, or my IgA blood test comes back positive.
- Mast cell activation syndrome (MCAS). This was proposed as a driver of my dysautonomia and other M.E symptoms back in 2017 by Dr Hakim. My new rheumatologist supports this theory. I am so lucky to have found doctors that are at the leading edge of the curve with this stuff. Most NHS docs will flinch if you mention MCAS as they do not believe in it at all.
What shall I focus on?
All of this has given me direction, even while waiting for the results of the rheumy tests. Living with this illness messes with your mind, because the research is just not there. There are so many avenues that you can investigate, with varying degrees of potential evidence.
Do you go with theories, and which ones? Do you spend money on tests and drugs when there is no guarantee will make any difference? How do you balance the possibility of an improvement to your health with spending more time and energy when you’re already struggling? How much money can you justify throwing at the problem? Not knowing what works, where some treatments work for some and not others, means you can end up chasing treatments forever.
But having the conversation with my new rheumy last week has given me focus. It’s reminded me about all the different avenues I have looked into over the years with a critical eye. It’s given me the confidence to pursue my ‘hunch’.
My current hunch – it’s all about my gut
I have a lot of n=1 evidence that, for me, my gut plays a very major role. My dysautonomia massively improved when I started taking Symprove. Also, there is a pattern that when my gut plays up, it isn’t just gut symptoms that flare. My allergies start to increase and I become even more sensitive to histamine. My dysautonomia and fatigue flare very badly. My joints feel a lot more unstable. My joint pain, sub-luxations, internal ‘inflamed’ fluey feeling, dysautonomia, and fatigue all started in earnest around about the time that I started having serious problems with my gut.
I was reminded of the impact of the gut and MCAS when watching Jeannie Di Bon interview Keeya Steele of Hells Bells and Mast Cells. Keeya talks about the complete remission of her dysautonomia and sub-luxations when her MCAS went into remission.
For Keeya, it was the antibiotic doxycycline that was the missing piece for her. She is now on doxyxcycline long-term, and has been in MCAS and dysautonomia remission for 2 years now. This matches my experience. I also noticed years ago that I had a few days of feeling like I was ‘cured’ when I was put on a short course of doxycycline for an unrelated sinus infection ( that it turns out I never had). It felt magical.
My Gut Plan
How do I treat my gut? Has anything helped? I’ve been on Symprove permanently since 2018, which was like a magic bullet. I’m also on a low histamine diet, and try to stick to low carbs, low sugar, high protein, and high healthy fats. But this alone is not enough when my flare is on another level. When this happens, I’ve used the simpler of the two antimicrobial regimes created by Dr Ruscio. I have tried out Rifaxamin antibiotic prescribed by my gastroenterologist a handful of times, but the results don’t seem to be as good and they don’t last as long. Also, my gut is in quite a mess after Rifaxamin treatment.
To minimise any interactions with my prescription meds and autoimmune condition, I use the antimicrobials Atrantil and Allimed for the antimicrobial regime as they have the fewest ingredients. Big disclaimer here – I am not a doctor, take the risks of my own accord, and only use specified dosages. Please do speak to your doctor before starting any new supplements. ‘Natural’ supplements can still interfere with your health conditions and medications, and can also be just as dangerous taken on their own.
Looking back at my symptom tracker when I last treated my gut with antimicrobials, I have written in capital letters after the 2 month treatment:
Feeling amazing! Hardly any gut pain, heading out almost every day, brain fog lifted. Seem able to tolerate histamine pretty well. Also eating dairy with no pain
Gosh, I really do forget these things. It’s so overwhelming with all the many triggers to my symptoms and variables that can affect me. But I did work this stuff out, I did work out something that helps me.
So…microbial gut treatment it is for the next 2 months. And I’m feeling optimistic that I might be able to get myself out of this year-long bigger flare. let’s see.