Steroid Use (for POTS) and Lyme disease

I've taken steroids for hyponatremia, and didn't have problems with it. It actually takes a fairly high dose to cause the immunosuppression that you seem to be worried about. Moderate doses usually aren't a problem.

Before doing this, you might want to look at potential causes for the hyponatremia. Are any of the medications you are taking likely to cause salt loss? Some examples are rifampin/rifabutin, fluconazole, bactrim/septra, and vitamin D.

Also you might want to get a 17-hydroxyprogesterone test done to confirm or rule out this potential genetic cause.

There are other meds people try for POTS, but if you have tried them all or have concerns about them all, then I would say go for it. If you notice a worsening of symptoms that could be related to active infection, then you can increase antimicrobials or discontinue the fludrocortisone. If there's something that will make you feel better, then it's worth a try.

The contra-indication for corticosteroids use in lyme patients comes from early clinical trials when they were used alongside antibiotics in patients with neuroborreliosis – on the premise that they would reduce brain inflammation.

Unfortunately, the long-term outcomes of these patients were found to be worse than those not given steroids. Worse outcomes included more severe long-term symptoms - and intractable disease that was harder to treat. This pointed to long term impacts from the steroids that was not necessarily recoverable.

There have since been many animal studies done with corticosteroids that found dramatically increased concentrations of pathogens in the tissues of animals treated with corticosteroids.
This was even the case with topical application to the skin of the animals rather than systemic oral or injected use.
The effect was not limited to borrelia infections (lyme). One study found the same was true for babesia - a protozoan infection ( single celled animal) in a completely different phylum to borrelia.

So, it would seem this is a general effect that occurs with any chronic infection.

This is all from memory – but you should be able to find these studies on PubMed
the mouse studies were discussed here in the last year or so - so you may find them with a forum search

Unfortunately – any dose of steroids that lowers inflammation – will also lower components of the hosts immune system – so I am not sure there is a sweet spot that allows benefits without bringing the associated downsides.

On the flip side there are a few LLMD’s who do use low doses of corticosteroids in treating their patients.
Dr M the bart specialist does so in some patients to try to control herx reactions during treatment - which would otherwise prevent their treatment with antibiotics - but we don’t have any data on long term outcomes here.

There is also the tragic recent case of a Dr ( Dr Lindner) treating his daughter for lyme, babesia and bartonella who was also using steroids to try to control severe reactions to antimicrobial treatments –
As treatment progressed – they increased doses of corticosteroids - until his daughter had some sudden massive immune reaction causing a severe haemolytic syndrome, organ failure and death.

It’s a one off case – and the doses were higher than typically used - but it seems that the steroids were implicated in the sudden lethal reaction.
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Based on the above - I would say be very cautious before embarking down this path

I would also be wary of feeling backed into a binary either-or choice - or falling prey to wishful thinking and looking only for evidence that lines up with what you may have, at some level, already chosen to do –

With Lyme there are always more options to try

i hope its of some help

hi Quin

he wrote about it here https://www.hormonerestoration.com/chronic-babesiosis.html

my comments were not pointed at you specifically Quin

i included the tragic example of Lindner's Daughter only because it illustrates that the effects of steroids in people with chronic infections can be unpredictable.

in that case it seems like they had been counteracting or maybe covering up underlying immune activation - which at some point could no longer be controlled with steroids and when it could no longer be controlled that way an unpredictable reaction spiralled out of control. i am sure it was done with the best of intentions - and steroid use and effects in that case probably seemed like it was predictable - right up until it wasn't.

that was an extreme case - with high doses - but even at low doses the animal experiments give a pretty good idea of how steroids basically allow the infections to increase bacterial load and become more deep seated - which the patient will have to row back again at some point. this would be my main concern in more typical low dose use. in this case a person may well be playing off short term symptom improvement vs worse long term illness

on "Primary" infections - Lindner is convinced that babesiosis is the major problem in many/all of his patients including in his daughters case - but i wonder if we can ever really know - testing is so poor - and people with lyme and bartonella infections also commonly report all of the issues his daughter suffered so in my mind it could just as easily have been bartonella or lyme of just the combination of all three

i'm not even convinced if the concept of "Primary" infections is useful as a model at this point

for instance - a person could feel that most of their symptoms seem point to say bartonella - but its equally plausible that bartonella only became an issue for them and their immune system due to some immune disruptive effect of a co-existing Lyme infection - which could be in the background both in terms of microbial load and symptoms pattern - but still the main determinant in terms of keeping them ill.
which would we then term primary? - the one that seemed to equate to the most symptoms - or the one that is keeping them chronically ill?

just my thoughts on the topic

we each have to find our own way through the complex challenge of this disease with only partial information

I usually take 20 to 40 mg hydrocortisone per day. Occasionally a bit more if I have low blood pressure.

I didn't have problems with immunosuppression at that dose. Mostly I took it for symptoms of HPA dysfunction as described here:

https://www.healingwell.com/community/default.aspx?f=30&m=4329764
https://www.healingwell.com/community/default.aspx?f=30&m=4331549

Just a thought: Licorice stops Cortisol breakdown thus raising it naturally and raising BLood pressure. Maybe it will be strong enough to have an effect but mild enough to spare you from immune supression

Ioski - I posted in a group for floxed asking about taking fludrocortisone and someone said this

'It itself isn't going to flox you. That's what fluoroquinolones do.

If you have been floxed already, however, corticosteroids are indeed widely recognised as posing risks of triggering major flares and relapses. I always discuss the necessity of any attempt to prescribe a steroid and whether there are alternatives.'

Post Edited (pinkblossom) : 8/15/2024 3:45:01 AM (GMT-8)

Hi Ioski, thank you so much! would you mind sharing the name of the podcast? as I would be keen to listen