Laura

protocols and others don’t at all. Creating personalized solutions for millions of people living with complex chronic illness is crucial, as is validating the tools we need to identify people living with different subtypes so we can guide the right care to the right patients 6/

as well as our *ongoing* trial of low dose rapamycin for immune dysfunction. These trials, and our careful phenotyping of responders and non-responders afterwards, will help us to validate different hypotheses and understand why certain people respond so strongly to some drug 5/

by SARS-CoV-2 or antigen persistence that exhausts the immune system? Is it a combination of the two? These are testable hypotheses that we should be exploring at pace. This is why our upcoming RCT of the Pridgen protocol for addressing herpesvirus reactivation is so crucial, 4/

@rachioella @canadiangymnerd @ItsLulu_7 My symptoms are more neuro: sensitivity to light/sound, crushing head feeling that forced me to lie down and close eyes, but not fatigue in the traditional sense. I would get a slight heavy body feeling, but not much.

@lauracollective @canadiangymnerd @ItsLulu_7 Did it help fatigue ?

I gravely need to find a doctor who specializes in ME/CFS. I'm entering into severe stage. If anyone can point me in the direction please help.

@DarainChains @AnciraBecky @DrMarjorieRobe1 @Carlos42474 @hoolie_r @LCPerspectives I know it doesn’t work for everyone unfortunately 💔. Have you seen the Pridgen protocol ? It’s valtrex, Celebrex for 4 months with 15 day pulse of paxlovid. But agree, we need more info and trials on combo treatments.

@lauracollective @AnciraBecky @DrMarjorieRobe1 @Carlos42474 @hoolie_r @LCPerspectives It didn't make me better. I was on it for a few years. Now I take it in bursts. It causes too many Neuro symptoms to stay on without great benefits. I need some combo treatment or something. I have been sick now for over five years.

Re: Treating as/with Herpes viruses I was, quite literally, close to death last year. After years of decline, I begged my physician to prescribe Valacyclovir. Within three days, I went from crawling to walking. For the first time in six years, I could think clearly enough to build an Excel budget sheet- something that had been completely out of reach. Even replying to emails had been overwhelming before that point. 1/8

@AnciraBecky @DrMarjorieRobe1 @DarainChains @Carlos42474 @hoolie_r @LCPerspectives I started valtrex two months after my first positive test, but 2 weeks of awful LC neuro symptoms and in 48 hours brain fog and body aches lifted. I’ve been on it 6 weeks and benefits are incredible! Really grateful I started early and wish more ppl had access

We are not asking to be passive subjects of research. We are asking to collaborate, to contribute, and to accelerate progress—because our lives depend on it. 8/8. @DrMarjorieRobe1 @DarainChains @Carlos42474 @hoolie_r @LCPerspectives

We have known for a while that #LongCOVID pathobiology for many involves reactivation of various herpesviruses. As we continue to validate this it is great to see this work coming out in collaboration with @VirusesImmunity’s incredible team. Here we medrxiv.org/content/10.648… 1/

@canadiangymnerd @ItsLulu_7 I’ve improved on just valtrex. But have an appointment with a specialist coming up and going to ask about the full Pridgen protocol. I was diagnosed with LC, not ME, but was experiencing neuro PEM crashes before I started taking the valtrex. I started valtrex 2months after COVID

@lauracollective @ItsLulu_7 Did yiu do Celebrex as well? Or just valtrex?

@ItsLulu_7 healthrising.org/blog/2023/08/0…

@ItsLulu_7 Not medical advice, but Valtrex improved my symptom significantly, to the point I have days that are practically symptom free. Look up the Pridgen Protocol, there have been trials on the benefits for ME & LC. There are also telehealth options for prescription.

@ItsLulu_7 rthm.com/resources/blog…

@singingsox I got one. I was hesitant it would make my LC symptoms worse but had no issues, insurance covered it, and I’m glad to have the protection going into the summer and probable summer wave. I’m too nervous to get mRNA now bc it always gives me the worst side effects.

Should I get another Novavax (Nuvaxovid) before the end of the month? I’m always on the fence about the spring one for some reason. Last one was October & went totally fine so idk why I’m always like ~*meh*~ in the spring (maybe worried it won’t be covered)

@freganmitts @theaichbee Did you wait the 3 weeks between? Sometimes they need to do back to back treatments. If we still have a lot of mosquitos after they spray, they will come back and re treat at no extra cost. You might need a few consecutive treatments to lower the population. Good luck!

@theaichbee I had three rounds of mosquito Joe’s and it literally did not reduce their number whatsoever

Does anyone have any advice for solving a horrific mosquito problem? Our entire yard is 100% unusable all summer. Sprays don’t work—you could soak yourself in DEET, picaridin, lemon oil, anthrax, doesn’t matter, they land on you by the dozens. They attack us IN OUR GARAGE.

@Davemconte Valtrex has really helped my brain fog.

#pwME, we know that brain inflammation is probably present in a lot of us. Though only one aspect of #MECFS, I feel like it's a treatment target. I did The Shoemaker Protocol for CIRS and it reduced my inflammation, inflammatory markers came down, my sleep improved, as well as my daytime symptoms. Severe to moderate, which lasted a full year. I'm severe again as of 2.5 years ago after a potent peptide reaction. I wonder if it created a cytokine storm and I have lots of inflammation again. Or not. Repeating the protocol hasn't worked. Do any doctors, researcher, patients know of a medical protocol or supplements (like NAC) or medications that have a strong propensity to reduce inflammation? I know there isn't much out there, and that LDN is talked about for that purpose. But what about other stuff, other than diet (which wouldn't have a huge impact on reducing serious inflammation)? @GenevieveIguess

@Sam_B_79 @Riemerville 500mg twice a day. I tried to drop to 500mg to see if I could stabilize but symptoms came back. So back at 500mg twice a day.

@lauracollective @Riemerville How much Valtrex are you on?

As I continue to improve physically, my brain health is declining. What are some of the things that helped you w Covid induced cognitive impairment?

@Riemerville It feels like a miracle drug as I was really struggling with horrible crashes (mainly mental crashes where I couldn’t think or put sentences together) after minimal exertion. It doesn’t work for everyone but seems to work really well for a subset of long covid sufferers.

@Riemerville Valtrex. I had horrible brain fog, dizziness and a general out of body/trance like state with body aches around 6 weeks after 1st positive. Started valtrex and two days later the aches went away and brain fog lifted. I’m on it 3 weeks and am about 85/90%. DM for details!

I don’t think people talk enough about the grief that comes with living in a body that you can’t control. Being disabled is such a huge toll mentally where you want to do something so badly but your body just literally won’t let you. The grief with that is absolutely unreal.

@The_Acumen Bring this to your doctor! yalemedicine.org/conditions/lon…

@lauracollective My eye doctor looked at me like I had made that up! 😤

I don’t care what anyone says. Honestly, I don’t care what any doctor says. Nobody knows my body better than me, and I know for a fact my eyes got more sensitive to light after getting covid.

@The_Acumen Unfortunately so many doctors are very ill informed about the long term complications from COVID infections 💔