Venting

@pattig09 I've had long covid since spring 2024, with fatigue, brain fog, dizziness, and shortness of breath being my worst symptoms. Last week I took a microdose of tirzepatide (lowest commercial dose is 2.5mg) of less than 0.1 mg. The next day, my symptoms quadrupled and I also had bad diarrhea. It's been a week, and I still feel awful. It's possible that drug companies are trying very hard to monetize their patents across new and multiple conditions and syndromes. I'm not trying GLP-1 until I feel better. The tirzepatide crash made me cancel treatments that made me actually feel better--moderate hyperbaric oxygen and various red light treatments. I care for myself and must drive four hours a day to a metro area for the above treatments. My little town is a health care desert and my PCP dismisses my symptoms. No one is going to pick me up and help me if GLP-1s wipe me out.

@juniper10
Research LDN; there are sites about it, even an international sight that our local sight has sense merged with.

I started at 1.5 mg and upon waking, and during the first week of taking it at bedtime, my dizziness, shortness of breath, and fatigue all went away; aches and pains I had had since covid, all went away. They want you to tritrate up and I am at 3.0 mg and I feel really well.

I think the site is called LDN Research Trust; they have tons of info and guides there. At the bottom of the first page, they have a patient guide, a prescriber's guide and a mental health guide, but most importantly there is information about LDN.

It helps!

@juniper10 Scientists are engaged. It even has a name in the medical journals: ‘post-acute covid-19 vaccination syndrome’ (PACVS). I've attached a science based detailed web page. It does help to download the PDF file and take it with you on all doctor appt. related to your PACVS. There are doctors who will a.) Review the facts of what the covid vaccines did to humans; and, b.) help you find solutions that will deal with the maltase that don't cause further deterioration. It sounds like it will take travel to find the care that is becoming available, however, you may be pleasantly surprised that your small town doctor may be the one you've been looking for, they just haven't engaged yet. https://www.sciencedirect.com/science/article/pii/S240584402501864X

Back in 2024 the National Institute for Health, a US Gov Agency 'engaged' in a public way. They have labeled it oddly: The Post-Acute COVID-19-Vaccination Syndrome in the Light of Pharmacovigilance. How appropriate that they finally are calling big pharma out on the Covid vaccine syndrome: Pharmacovigilance means: 1. The detection, assessment, understanding and prevention of adverse effects of medicines. While it is harder to get doctors to read this report, it is worth reading to get correctly diagnosed and to change the way insurance providers think on the matter of Long Covid coverage: https://pmc.ncbi.nlm.nih.gov/articles/PMC11680367/

@lesligirl02
LDN has been life changing for me in drastically decreasing my Long COVID pain. I obtain mine online through AgelessRx (a reputable one-stop shop for diagnostic screening, prescription fulfillment, and onboarding guidance). I second the recommendation of the LDN Research Trust's website: they offer excellent, inexpensive informational webinars, both presentations by leading practitioners and Q&A sessions with compounding pharmacists who are knowledgeable about LDN.

Another great source of info on LDN is the reddit group called Low Dose Naltrexone. There is a reddit administrator who uses the handle LDNadminFB who is brilliant at compiling info on different ways to use LDN and how different bodies need different doses and approaches to LDN. His documents really helped me tune my use of LDN in the right direction. I was able to alleviate over 50% of my long covid symptoms after a year on the medication. I am hoping I never have to stop it!
https://www.reddit.com/r/LowDoseNaltrexone/

Hi. There is a lot information about LDN; I have been taking it for a while, and it has been incredible for me.
I started at 1.5 mg per my doctor, I take it at night time and the morning after, I felt amazing when I woke up, and during that first week a lot things happened, a shortness of breath that I had had completely went away; never to return, and aches and pains, and even cleared my sinus' up; the list continues to grow.
It is a powerful anti-inflammatory and works in several different ways.

I researched and researched before I took it and the most informative site about LDN has some guides; I am attaching them for you. Functional medicine and other type of doctors are speaking about LDN now.
I hope maybe this information will help in so me way. They provide these guides in order to allow you to better speak with your medical professional about it.
Covid and even the vaccine left much illness behind and LDN is helping with a lot of it.

@lesligirl02 Thank you! That is great information. I am already taking Naltrexone. I also started taking Turmeric (Curcumin) before bed and propanolol. I still wake up feeling really bad on some days, but I am grateful for the days I feel okay. I am going to the doctor this week to get blood work done again. I found a doctor who at seems to think outside the box and actually believes that Long COVID is a real thing. It all ties to inflammation, at least that is what I believe and seems like a lot of you folks do as well. I will keep you all posted about blood work. Grateful for you all!

@diverdown1

Hey, I wonder if its the propanolol that is making you feel badly when you wake up; they give me that when I have my colonoscopies and I always feel weird for a few days after.
And I don't know the curcumin would interact with it? Were you taking the propanolol before you started the LDN or started after? I always have to troubleshoot myself, what is different; in almost everything I do, and it helps me with solving issues.

@diverdown1

I did just google "why would one feel badly taking propanolol upon waking" .
There are a few things listed; maybe google that; you would know if any applied to you.
It rather made sense.

@lesligirl02 I don't take propanolol daily. I use it when I have anxiety. It can lower blood pressure and it helps reduce the cortisol. As far the LDN, I have been on it for awhile. The Turmeric (Curcumin) for several weeks now. I am going to my doctor again, actually, Wednesday. Dread it but I know I need to see where my blood work stands. She is also going to test my cortisol levels. This virus is crazy. I believe it runs the gambit of autoimmune symptoms. In four years, I have had GI issues, bladder pain, tinnitus, brain fog, joint pain and inflammation, malaise, fatigue (those are the biggies), sensitivity to foods that were not an issue before. I drink nothing but water (except for a cup of coffee in the morning) as I started having symptoms of interstitial cystitis. I used to always drink green tea until I got this and then started feeling like I had a UTI all the time, which I did not, so I just drink water as that seems to stop that. I understand where you are coming from troubleshooting all the time. I am better than I was in 2022 and 2023, but still have awful mornings and days. Hang in there.