POTS

[PATRICK FREE]

Good afternoon everyone. I wanted to submit a case study hoping to get other ideas/guidance on treating POTS. I have a 41 y/o female who presented initially in Feb of 2023 with concerns of fatigue, IBS-type symptoms, joint pain, HA’s, insomnia, flushing and had experienced a syncopal episode standing, cooking in the kitchen just prior to the visit. She recently had a COVID-19 infection a few months prior to the syncopal episode.

Since the syncopal episode she has been experiencing POTS-like symptoms: random events of tachycardia with hypotension/hypertension with diaphoresis and near syncope, at rest or when standing, and seems to definitely be triggered by heat. Her laboratory values revealed unremarkable CBC, CMP, Thyroid panel, and inflammatory markers (crp, esr, ferritin, and uric acid).  An ANA was obtained and positive at 1:80 with a nuclear, homogenous pattern and no reflex antibodies.

Her GI scores on her screening questionnaire were the highest and we decided to start with treating the gut. She was placed on an elimination diet, with the 5r protocol for 5 months, which included numerous peptides including BPC/KPV. Her GI symptoms completely resolved in the 5-month time frame, but her fatigue and POTS symptoms were still moderate to severe. We implemented stress reduction techniques and added in ketone esters 5g daily, with TA1 1500mcg twice weekly, pentosan polysulfate 125mg biweekly, and LDN 1.5mg daily to aid in modulating inflammation and the immune system. She is also simultaneously being treated with PT, has had a neurology consult with negative MRI brain and EMG testing, and cardiology workups: stress echo, ecg which were also negative. She is scheduled for a table tilt test in one week. Her symptoms significantly improved with the aforementioned protocol. Prior, her symptoms were so severely debilitating, that she could not work, exercise, or complete many simple ADL’s.

Due to her improved condition, she started to increase her activity by going back to work, taking her kids to school, and walking more frequently. Within days she had a severe relapse, the paroxysmal tachycardia with dizziness, hypotension, diaphoresis, etc,  were much more frequent and severe and she was pretty much back to where we had started. She is still currently on the pentosan but had been off of the ketones and TA1 for a few weeks prior. The overall plan was to improve her mitochondrial function and aid in the repair of small nerve fibers.

Moving forward the plan is to restart the ketone esters, administer ARA 290, and MOTS-C.

I am grateful for any tips/suggestions and how you all are currently treating this condition. Thank you.

[Kristelle Reyes]

Hello @byurthgmail-com, @cpaigepaigemd-com, @andkeller2gmail-com, and @madisonseeds-md, we would love to have your insights here. Thank you! 🙂

[Rebecca Repaire]

I do not know much about this area, but have heard that possibly IV hydration therapy may help with POTS symptoms.  I also have a similar patient.  Does anyone have any experience with this?  Thank you for the information above.

[Erin Ponds]

I have a personal friend who had severe POTS to the point she was bedridden. Her PCP told her she would need to go on disability and quit work. She started seeing an MD who is also an acupuncturist. He treats her with acupuncture monthly, and she has had complete symptom resolution. She has continued acupuncture for 4 years now and is still doing great.  It sounds like you are doing wonderful for her; perhaps acupuncture could help, too.

[Cynthia Keller]

Patrick-

Just a few thoughts to lay out here to help come at your 41 y/o patient (or any patient with POTS for that matter) from a “step back and think” perspective.

I like your thinking and they way you came at her case.  And in so many more easy and straight forward cases, these things that you did would have helped her get “right” enough that she likely would have been able to finish healing.

However, when you get someone like this who cannot get back on her feet despite your good thinking and treatment plans.. then I recommend doing the below (which is reminiscent of what I say for pretty much any tough patient on the discussion boards that I talk about no matter if it is a patient with CIRS, Chronic tick borne disease, POTS, mast cell activation issues, etc)……

POTS isn’t really the primary diagnosis right?  It is a description of something that is happening due to dysregulation of the patient… due to “something”.

And while there are lots of medications that you could use for just the POTS, if POTS was THE issue (beta blockers, midodrine, etc).  There is a nice (and easy reading) little book that I will try to remember the name of (about POTS) that has pages for the patient, and pages for the doctor which can be helpful for brainstorming ideas together.  When I stop trying to think of it, the name will likely come back to me… and then I will come back and add it here. 🙂

Instead (what I think is the correct question that you are asking here) the real question is: why the POTS? and why isn’t she recovering?

In my experience, pre-CoVid I would have suggested that the above patient had underlying TBD (like chronic Lyme, etc) almost assuredly.   And that you should work to stabilize their POTS and limit their activities until getting their Lyme “beaten back” a bit.  However, now… as CoVid seems to be “the great equalizer”, I see what you are describing here in people who I do not think have TBD.  Meaning, that CoVid can pretty much F-up the immune system as much as I used to see only chronic Lyme do.

So my first recommendations on your patient would be:

-work up for Lyme/TBD (if you are not experienced at this, enlist the help of a Lyme literate doc (ILADS is a good place to look for resources).

-At the same time I would have tested for EA for EBV to see if there was a re-activation of this in response to the CoVid illness she had.  Treatment of chronic/reactivation of EBV is a heavy topic in itself.  If you end up with this as the issue… re-ask me for ideas for this.

-If the above isn’t an issue then I would think that it was the CoVid itself (well really the crazy immune and inflammatory response to CoVid, right) I would then sort of call this “long-haulers dysregulation” . And for this I would consider:

a) Glia, and then if helping I would add Neuro (join the amazing Dayan’s Round Table discussions or take a look at his education programs now).

b)I would also start Larazotide 500mcg BID initially to help stop the GI damage from CoVid from continuing to strike the match on the inflammatory response

c)Tollovid (3cl protease inhibitor) wondering if there was still some indolent low level viral activity present

d)I would restart the TA1 if it fell off and if still available.

And then I would reassess in 2-4 weeks.  Of course there are a million more good ideas to try (you picked some good ones to try first), but if I had to pick a few things to do right now, these above are what I would pick to try first.

If the above was bringing back some of her vitality… then “great” and I would know which way to continue working.  If not… and there was no change, I would know that I needed to go a different direction (meaning I would stop these treatments and ask the next treatment “question” like below).

In short, I would keep asking questions like “maybe healing cell membranes, and the GI lining and killing CoVid will help”?   And then (this is the most important part) I would pay very close attention to the response her body gave.  I value these answers (how they responded), more than I even value lab results.  This is the way to solve the issues plaguing any patient with complex health issues.

-If she had no response to the above at 1 mos, I would maybe consider if her symptoms were mislabeled as POTS but might actually be more Mast Cell activation related (can drop BP, can make heart race, can cause syncope, absolutely can cause disability, etc.  Also, heat can also be a frequent trigger in these patients).  This question of “could this be a mast cell related issue instead”? would then be my next question I would ask.  In this case I would likely do a trial of pepcid, Xyzal, singulair and add gastrochrom (if any symptoms related to food intake).  This is sort of my “poor mans” Mast cell “lab test”.  I do this for 2 weeks and ask, “did it help”?

If it helped some… I go further down this path.  If ZERO change, then I stop these and ask the next question.

-And so I go step by step until we get someone who is READY for the reconditioning with PT.

To be clear, the recovery from POTS (or long haulers, etc) can be greatly helped in the last step by reconditioning PT (done by someone who knows how to do this well, and listens to the patient)… if done too fast we see huge back slides.  And you can fully tip the patient way back down to where you were when we started this discussion… and needing to go back to all of the steps we already just did.

The same is true if they think that they are better… but then push themselves too far or too fast.  They don’t just get worse for that day, they often get worse for months again.

So just like I said that the PT needs to listen too them (and not push them too fast or too far), the patient also needs to listen to themselves and really rest when they know that they are at their limit.  To this point in your patient story above…

When your patient felt better she went back to work, started taking her kids to school and started taking walks again.. and within a few days had a relapse.  She likely should have started with taking her kids to school one day, and if that went ok… then trying just this for a week.  And then short walks around the block… all before thinking that she should step back into a stressful work setting, etc.

And I am not blaming her, I promise.  It is NOT her fault.  After feeling somewhat better after all of that, she was hungry for re-entering life.  I get it. 100%.  So with these patients, you being there and educating them along the way will be as important as any treatment you offer her.  Especially when they become disheartened!

I am not promising that I will have guessed it correctly with my few clinical “questions” (treatment trials above).  However, if you work in this way… or if you tried something like this……. even if she wasn’t all better at the end of these few steps, I do know that you would have a lot more data about which direction to go, or as importantly,  not to go as the next step.

I hope that you have luck helping her in your next few treatment trials with her.  Or, better yet… I hope that by the time this posts, she is already better since it took me a few months to respond here.

Warmly,

Cynthia

 

[Cara Lever]

Cynthia, can you please drop your contact information?  I have a client whose daughter was diagnosed with pots and wheelchair bound at 14.  I don’t have enough experience but I want to send her your way.

please and thank you! She’s in FL.

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