posted
I know that steroids are generally not recommended when people have Lyme disease because of possible reactivation of dormant infections and worsening of active ones. But I'm interested in taking a very small daily dosage of fludrocortisone for dysautonomia, low blood pressure / orthostatic hypotension and POTS. This would be prescribed by my cardiologist.
I'm already taking slow sodium, mestinon, wearing compression garments, hydration and nervous system work. Midodrine worked amazingly but I couldn't tolerate it. Ivabradine isn't an option because it interacts with another medication I'm taking for a different condition. So it pretty much leaves fludrocortisone as one of the only options left.
Does anyone here take steroids for anything? What is the consensus with steroids and Lyme? Has steroids negatively impacted you because you have Lyme disease?
And for those with POTS, dysautonomia, low bp / OT - is there anything else you could suggest to help me? Thank you!
Posts: 80 | From UK | Registered: Mar 2024
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I hope I can articulate my experiences with prednisone, hydrocortisone (cortef), midodrine and fludrocortisone.
I WAS the queen of steroids, all prescribed by MD’s. I would rave about steroids and wished they were available OTC because they made me feel better and gave me my life back.
Started in 2013, when I got bit by tick.
My 1st cry for help was to my primary doc, complaints of intense muscle skeletal and joint pain. He prescribed prednisone.
My 2nd cry for help was Rheumatologist, he prescribed prednisone.
My 3 rd cry for help was Neurologist, as symptoms expanded to neck pain, brain fog, derealization and exhaustion, he prescribed me prednisone.
Prednisone kept me in the workforce for 3 1/2 years and then I crashed and became bedridden and very close to death.
I found new primary doc and a LLMD.
Primary discovered I had Primary Immune Disorder (Immunodeficiency ) and referred me to Immunologist. I was prescribed IVIG infusions monthly until my immune system went back on line. I am now on year 7 of receiving ivig infusions and will probably be on it for life. They could not determine if it was a genetic or an acquired disorder, due to their lack of interest with Lyme disease in the clinical picture.
My LLMD straight out told me I will NEVER be able to clear all my infections due to my immune status,
My LLMD diagnosed me with Lyme and Bartonella and I was started on a very aggressive antibiotic protocol, got well after 11 months, quit my LLMD and returned to work.
Within 6 months I relapsed with Babesia and severe POTS symptoms. I started on Mepron, Ariz, and Art.for Babs and Hydrocortisone 10 mg 1/2 tablet morning, 1 tablet at lunch and 1/2 in evening, Within 4 months all symptoms gone.
I definitely NEEDED hydrocortisone during that time to become stable.
POTS came back the following year so I was put on Midodrine 25 mg once per day along with Fludrocortisone 10 mg at night. Also started back on Lyme and Babs protocol.
Once my infection load was minimal, all my POTS symptoms disappeared!
I am now treating myself after 6 years being with my LLMD because I will never be cured but I can maintain a life worth living. It’s hard work and takes a lot of time but it’s achievable for me, especially in the summer.
I still have mild POTS so I drink lots of fluids, lots of salt, compression socks and wear a neck brace in the mornings.
Steroids and an immunocompromised status can cause severe presentations of babesiosis, even fatal. So I have to be careful with ANY type of infection.
There was a case where high dose steroids were administered to control Jarisch-Herxheimer Reactions in Dr Henry Lindner’s daughter Valerie, which ended in deadly consequences. https://hormonerestoration.com/chronic-babesiosis.html
While Dr Lindner is a brilliant doctor, I do not believe in his hypothesis of high steroid use while fighting these stealth infections. Many LLMD’s also state contradictions in his theory.
My advise is for you to weigh the pro’s and con’s, lowest dose possible and the shortest prescribed time if that’s the route you take. Steroids are needed in certain instances, it’s just that we have other conformities to consider.
Posts: 3217 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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Member # 49177
posted
Also, Dr Joseph Burrascano addresses POTS treatment in Tick Born Infections in his “Lyme Diagnostic Guide’, page 6
“ Neurally mediated hypotension (NMH) is not uncommon. Symptoms can include palpitations, lightheadedness and shakiness especially after exertion and prolonged standing, heat intolerance, dizziness, fainting (or near fainting), and an unavoidable need to sit or lie down.
It is often confused with hypoglycemia, which it mimics. NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina.
NMH is diagnosed by tilt table testing. This test should be done by a cardiologist and include Isuprel challenge. This will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and sympathetic dysfunction.
IMMEDIATE supportive therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added based on response to the Isuprel challenge. The long term solution involves restoring proper hormone levels and treating the Lyme to address this and the autonomic dysfunction.”
Posts: 3217 | From Florida | Registered: Nov 2016
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kgg
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Member # 5867
posted
I was reading on a long covid group and saw a protocol mentioned for POTS, by Dr Binita Kane.
She has a whole protocol for POTS that does not include steroids. This is just to let you know there are other options.
Posts: 1844 | From Maine | Registered: Jun 2004
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Rumigirl
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Member # 15091
posted
Personally, I wouldn't recommend Prednisone, unless you're in life is in danger. But I'm not a doctor.
I've had POTS, and then Neurally-Mediated Hypotension, and flunked the tilt-table test. I was on low-dose Cortef, Fludrocortisone, and later added Midodrine.
This was after having had a lifetime of uncountable tick bites. And also a lifetime of almost passing out, plus once of passing out and hitting the pavement, as a kid.
A few years ago, my always very low BP became a bit high, so I went off the meds to raise my BP. But that was a blip, and, it turns out, not a good idea. I've since had severe problems being upright.
In addition, I passed out and fell and it my head twice in recent months with no memory of the fall!! So, I'm back on the meds, that I probably never should have gone off of.
That's a long way around speaking about this. But the meds can be a lifesaver, when needed. Yes, I am long overdue to go back on treatment (which I never meant to stop).
bartenderbonnie is right that treatment for the infections is crucial, with the supportive meds when needed. But Prednisone isn't a good idea unless your situation is life threatening IMHO.
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Rumigirl
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posted
Btw, Bartenderbonnie, you mentioned that in the past you were on 10 mg Fludrocortisone. I presume that you meant .1 mg, or .1 mg x 2. 10 mg would be a humungous dosage!
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Rumigirl
Yes, you are correct. I took 0.1 mg Fludrocortisone.. Sorry Lyme brain.
Posts: 3217 | From Florida | Registered: Nov 2016
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Rumigirl
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Member # 15091
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I completely understand! I have serious Lyme brain, complicated by having to take Lyrica at night for the horrific neuropathic pain that I have all. of the time. The side-effects are awful!!
But I've always had a brain for medical details, so that remains, thankfully. I wanted to be a doctor, but already had health issues, so figured internship and residency would have done me in. Wish I had, however. Not to highjack the thread.
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