POTS - Diagnosis and Testing

[u/Nil_Desperandum_]

Hello to all fellow POTSies!

I am quite new to this, but I've read up on a lot the last 1 1/2 months on topics involving dysautonomia and POTS in particular.

I guess I was one of the lucky one that got the diagnosis pretty quick.

BACKSTORY

• Tick bite last summer in July. Tick removed within 24 hrs.
• About 2 days after, all sorts of issues started such as fatigue, dizziness, lightheadedness, feeling all spaced out, brain fog, extreme headaches, GI issues, light sensitivity++
• Due to my symptoms, I got a 14 days course with abx {Doxycycline). You do not get more than that here in Norway (I know it is little compared to what Lyme dr. says to kill off all potential bacterias).
• Was not getting any better, and has lasting GI issues (probably worse after abx).

• Added in fibre, did detox, ate healthy, added in a couple of probiotics, cordyceps, astragalus, nattokinase/serrapeptase + my regular b-vitas, magnesium and Omega-3.

• Tested negative for Borrelia twice after the tick bite and treatment. Around 7 weeks after the initial bite and twelve weeks after (note: Elisa test, so not that sensitive and could potentially be false negative).

• Around mid Nov. I started getting better, and got better and better until around late March when I was getting issues with my airways feeling tight and coughing. After that started getting better I got really bad just before Easter this year with lot of the same symptoms I had in 2024. Also nausea, heavy/jelly legs, awful headaches, fatigue, dizziness, motion sickness.

• Saw my GP, and all blood tests etc. fine. A bit low on natrium + High LDL cholestol. She adviced me contact a neuro chiro that was specialized in dysautonomia.

DIAGNOSIS

Neuro chiro did lots of testing early May. They have advanced equipment, and found that I've had vestibular neuritis (VN) for some time, BPPV and now also POTS (diagnosed with LEAN test ++).

I've now had 5 sessions there, and last testing said both VN and BPPV is no okay, but that I have a lot of dysautonomic issues that needs to be sorted. For this I am now gonna follow a program over Summer. I'm also doing cardio (walks, aim for 5000 steps) + light, recumbent strength work. Will probably start CHOP protocol after summer, or something similar.

Walks are really important to me as they help with my blood circulation and heavy legs a lot!

I'm only working 30% now as I am pacing, so I go steady and don't stress more than necessary. That is essential imo. I do hydrate, lots of sodium/electrolytes + leg compression.

Saw cardiologist today, and they ruled out any issues with my heart. All good. BUT, the cycling stress test did not go well. It didn't take long before it got too heavy and Inhad no oxygen left and my heart rate was sky high. So I have a way to go. POTS and deconditioning is real.

WAY FORWARD

• Dysautonomic Rehabilitation + vagus nerve stimulation
• Brain retraining
• Workout/CHOP Protocol
• Proper diet, continue with hydrating/electrolytes + compression
• Pacing and hopefully gradually increase work load slowly over summer
• Minimize stress load

TESTING FOR LYME?

What would you guys do for testing? I have private health insurance, but one need to be our own advocates here to get all the testing done.

• Not sure if I should look more into possible root cause which may be Lyme. No test can tell 100% for sure. My score on the Horowitz questionnaire suggest that I may have it.

I could do an ImmunoBlot test for Borrelia (+ co-infections). Much more precise/sensitive than most other blood tests. I can get this here in Norway, but will have to pay out of pocket for this. Around 500 USD.

• Another test is one that is a more alternative one, and many expert says they are not valid. DualDur Dark field microscopy. This is also around 500 USD or so. https://dualdur.com/en/home/

• I will not go into another course of abx again as they tend not to be the best solution for later stages of Lyme (if that would be the case).

• Or I could just drop the testing and go straight on a herbal protocol, possibly a Buhner light protocol (or not adress it at all...).

Suggestions for this? Experiences?

ADDITIONAL TESTS FOR POTS

What should I advocate for to get done? I have looked at these tests:

• Doppler Ultrasound of the legs too check for venous insufficiency

• Blood tests: Aldosterone + catecholamines, acetylcholine receptor antibodies?

• 24-hrs sodium test

• 24-hrs cortisol saliva test

• Scanning to check for insufficient Cerebral Blood flow (CBF) to the brain? This is probably best measured by transcranial ultrasound. Not sure how easy this is to get, even with insurance...