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LC and compromised stress hormones
I’m now 6+ years into Long Covid with disabilitating symptoms never improving: high BP at rest but with ‘postural hypotension, not Pots’ , diagnosed with tilt table test. I cannot stand hardly stand, or walk, for more than a few minutes before I become breathless and feel like a giant magnet is drawing all my energy from my shoulders/ upper arms and have to sit or lie down immediately else I will pass out completely. This feeling can also be accompanied by diarrhoea and on one occasion vomiting. I’m in the Uk and medics tend to be very specialised: cardiologists have declared there is nothing wrong ( ecgs, echocardiogram etc ok), similarly respiratory consultant sees nothing wrong with lungs. But for much of the 6 years I was left on 4-5 simultaneous antihypertensives; I had done all the Pots- type tips ( compression garments, hydration, no caffeine etc etc), even swim 4-5 times a week the last 3 years…but no improvement. But now got to see a specialist in a ‘Renal and hypertension’ dept.who suspects the stress hormones are ‘out’ and getting more unusual tests and CT scans. With the exception of loosing weight I seem to match many of the symptoms of adrenal insufficiency… the lack of weight loss actually has surprised me as I don’t eat much as LC meant loss of smell and about 3 years felt more obliged to eat when I was not hungry ( even so fast 16 hours daily). Anyone with LC had similar problems, diagnosed adrenal insuffiency, and have you had treatment? I have seen lots of y.ounger ( I’m 72) American dysautonomia sufferers refer to HyperPots, but many seem to benefit from the ‘tips’ above and get a PIP ( pill in pocket) or HR pill that have done nothing for me. Love to hear from others, incidentally the new consultant is throwing everything at my problems, but he doesn’t like my DIY research and wouldn’t explain the route he is exploring!
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Two physicians, one from Stanford and one from Chapel Hill, NC (Dr Richard Semelka) suggested, and then prescribed LDN for me for a scenario that also altered my immune system.
Like the covid vaccine, and covid itself does, I retained gadolinium, a heavy metal, contained in contrast dyes, in my system following a mri w/contrast.
It caused me a great many problems; that was in 2017; doctors denied that I would have retained the dye in my system if I had only one dose of the dye for the procedure, and then a million other reasons why I would not have retained the contrast dye in my system, DEPSITE the fact that when I walked out from the procedure, I couldn't function, my brain wasn't functioning, I was off balance and depth perception, etc, was off, and the issues continued to grow. My doctor told me they didn't teach them about these things in medical school, the neurologist said I looked fine; nothing wrong with me, and the radiologist told me that it was good contrast dye, wouldn't cause those issues, that I would have to have had a lot of procedures with the dye for it to stay in my system, but I had not.
Finally, after my own research as I wasn't getting any help, I found Dr Richard Semelka in Chapel Hill and consulted with him. I eventually started travelling to NC to get chelation therapies to pull the nuclear contrast dye out of my system. Got a bunch out, but over time acquired multiple more issues, issues in bones and muscles, shortness of breath, metabolic syndrome; although I walked all the times; several miles a day, wasn't losing any weight, and was very, very tired.
We have removed a lot of the contrast dye, and I never got the vaccine since they told me that my system was already compromised from the contrast dye, but I did get covid one time.
I am now realizing that some of my symptoms that I had acquired more recently were most probably from covid, but this scenario has gone on from 2017 when I retained the contrast dye to now; I got covid in 2023.
I was in a study at Stanford and continued seeing Dr. Semelka; both recommended LDN, starting at 1.5mg and tritrating up to 4.5mg. I am at 3.0 mg now and I am greatly improved. The first thing I noticed was that I felt amazing when I woke up, and within a week several other things happened, a shortness of breath that I had had, went away, aches and pains went away, my sinus cleared up (except for pollen season, which is normal), and I started losing a couple of pounds which told me that my metabolism was functioning well again.
I did a lot of research before I started taking the LDN, but found really great information that was encouraging, and most recently echoed by functional medicine doctors and many others.
LDN Research Trust has tons of information, along with three guides, one for; one for patients, one for physicians, and one for mental health; they have been incredibly helpful.
LDN 2026 patient guide (LDN-2026-patient-guide.pdf)
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2 Reactions@lesligirl02 This PDF is very helpful. There are many different groups within this Mayo Post Long Covid Recovery main group that can benefit from this document about LDN. Perhaps you can take that piece of your post and add it to the various posts so more sufferers who haven't read this particular "LC and Compromised Stress Hormones' posting can study LDN as a treatment option. Thanks.
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1 ReactionThanks pattig09!
I'm new at this; just wanted to get involved because I know how much it has helped me and has the very real potential to help others.
I am going to upload the other 2; I couldn't figure how to upload all of them at the same time
I will certainly try to post on other sites, but please feel free to share the ones I am sharing.
LDN 2026_Prescriber_Guide (LDN-2026_Prescriber_Guide.pdf)
LDN 2026_Mental_Health_Guide (LDN-2026_Mental_Health_Guide.pdf)
LDN 2026_Dosing_Guide (LDN-2026_Dosing_Guide.pdf)
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1 Reaction@lesligirl02 . I think Long Covid has unmasked susceptibilities in our bodies we didn’t know we had, or barely troublesome( eg in my case EDS related), but research re the stress hormones certainly suggests a link. I have infact got a prescription for LDN and a bottle sitting in my fridge waiting to be taken but with the dr.doing lots of blood/urine tests and scans I have prevaricated to keep symptoms as they are. I have fibromyalgia from well, before my Long Covid and tried LDN and medicinal cannabis without any relief…but as the investigations cease will retry the LSN with the incremental dose procedures….like any LC sufferers I will patiently try anything (if cheapish)!
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1 Reaction@wilsonanderson
I will say that the filler that they pharmacist uses makes a HUGE difference on the effectiveness of the LDN. I tried 4 different fillers and went back to the original one that Medtown Pharmacy uses, lactose, as their filler as theirs is the only LDN that has worked for me.
I used theirs first and ended up thinking after talking to the that might be lactose intolerant, but I felt so well and the shortness of breath that I had, had gone away, muscle and joint aches and pains had gones away, I saw some of the blood tests numbers rebound back to where they should be, and my list is long.
I pay $50 a month for the LDN, and I did check out the other pharmacies with the fillers that they use and I didn't feel a thing, so went right back to Medtown.
@wilsonanderson
some LDN info from the LDN Research Trust that I have found; these might help; I take them to my doctors!
LDN 2026_Patient_Guide (LDN-2026_Patient_Guide.pdf)
LDN 2026_Prescriber_Guide (LDN-2026_Prescriber_Guide-7.pdf)
LDN 2026_Mental_Health_Guide (LDN-2026_Mental_Health_Guide-7.pdf)
LDN 2026-DOSING-GUIDE (LDN-2026-DOSING-GUIDE-1.pdf)