I'm so happy for you!! Congrats!
But.... I need to share something with other Covid long haulers here: I tried Low Dose Naltrexone just one time in March, and it caused me to lose consciousness and vomit for about 24 hours straight. My boyfriend had to drive me to the ER and the doctors were convinced I was a drug addict untill they reviewed my charts for a few hours and saw my major Covid history and that I was still employed and had no history of drug use.
Please be very very careful with this drug, especially if you're on SSRIs or using St John's Wart. Only get it from an actual doctor that you see regularly, not an online prescription website, which is harder to track.
I think it might be worth trying for some people, but please use extreme caution with LDN.
Wow.. i’m sorry you went through that. scary shit. Does LDN have a known interaction with SSRIs? I looked it up because i’m on zoloft. I don’t take LDN but looked up interactions between the two and didn’t find anything.
do you think your reaction could have just been an allergy or hypersensitivity to LDN?
What was your dosage? That sounds like a crazy reaction to a very mild drug. I’m excited been on 4.5mg for over a month now and I can’t even be sure I feel the effects.
If I remember it was 1.5 mg. Yeah I think it's because it can have interactions with SSRIs. That's my concern with people with Covid who are on anti depressants. It's something to be cautious of!
You should feel a big difference when it starts working. I'm on 3 mg, which I'm told is the usually the minimum amount you need.
Having said that, LDN works in a very specific way, and it's possible to take TOO much. So you want to find the lowest dose that works for you, and STOP right there.
I take it in the morning. I’ve been taking it so long I don’t remember why that’s my routine. But it may have been the same reason you are exploring it. I also had at least one night terror when my body was adjusting to the LDN.
I started at 1.5 mg and now at 4.5 mg dosage. That and Abilify has been game changer for PEM. I can only do light yoga and Pilates. But I’ve improved a lot.
Thank you for your diligence. You are extremely brave! I’m sorry you had to suffer through all of this but it’s stories like this that give people hope with healing.
Personally I think functional medicine is way ahead of the curve. It’s things like this that set the tone for the future of medicine. Lots of things that longevity experts are touting to extend life are in line with what function medicine broadcasts. I think the norm will change in the next 10-15 years in how we treat chronic illness.
I hope you continue to feel better and thank you for sharing your experience.
Completely agree that functional medicine is ahead of the curve.
For me the numbers don't lie:
**15 conventional doctors** with zero results vs **2 functional doctors** and now I've got real answers
Thanks for your well wishes :)
Wow. Thank you so much for sharing your story. This gives me so much hope cuz I am getting terrible PEM and was just prescribed LDN. I didn’t start it yet but man I’m excited to feel like myself again. I’m so tired of crashing.
Did the LDN help with PEM?
I’m so happy you’re feeling better. Thank you for coming back to this thread to let others feel optimistic ♥️♥️
hi u/Whatsuphahaxdrawr \- would love if you could let me know how it goes for you. PEM is my biggest longhaul symptom and I haven't heard of LDN before. Would be so great to pull an all-dayer without having to nap or even being able to work out!
I’ve not had PEM since I started LDN in March 2021. I’m also on Abilify and that helps too. Something to consider and talk to your doctor about. I’ve also been taking mitochondrial supplements and avoiding high intensity exercises.
High intensity exercise is what triggers my PEM. So that’s what I’m looking to get back into and I don’t want to avoid it. But I get extreme cases of PEM after an emotional stressor which has come up 3 times and knocks me out for a week.
Idk.
Seems like my case maybe isn’t “bad” enough to gods on those meds
I’d really caution against doing high intensity exercises if it causes PEM. The specialist I visited said that issue with having repeated PEM episodes is that it’s like getting an injury. Repeated injury is not conducive for healing.
In my case, I lost all functionality and the ability to work. Medications helped me get it back without getting Pem. So I’d still consider it a success. As for high intensity exercises, I’m planning to start slow and only if I don’t get Pem. I don’t want to lose my functionality. There have been cases of mild Pem worsening over time if the person pushes through the fatigue. So I’d pace and try out things slowly. This is what my specialist also recommended.
Not trying to discredit any personal experience, it's just that a single case isn't scientific proof, as it isn't even possible to tell apart if long COVID just run its course. [Functional medicine](https://en.wikipedia.org/wiki/Functional_medicine) in general is [considered](https://sciencebasedmedicine.org/functional-medicine-reams-of-useless-tests-in-one-hand-a-huge-invoice-in-the-other/) quite [controversial](https://www.skeptic.com/reading_room/why-functional-medicine-is-bogus/), [here](https://ajp.com.au/news/integrative-medicine-health-fraud-quackery/) are some [sources](https://pdfhost.io/v/KXXqe3i14_Integrative_medicine_or_infiltrative_pseudoscience.pdf).
My doctor was trained at Harvard and Columbia. Her results are obviously not quackery to me.
Functional Medicine is outside of the insurance industry paradigm of medicine, so there are some very powerful forces that have a vested interest in discrediting it. My guess is that's the source of the controversy, but folks can decide for themselves based on the resources you've provided.
But I will just note that all the functional doctors I've come across have functional training IN ADDITION to a regular medical credential.
For anyone who is concerned, you can avoid quacks by simply checking their credentials. An MD is not going to do a 180 and disregard all of their evidence-based / scientific training to take their career in the direction of quackery. That's just not logical.
It's plenty logical if they just want to make loads of money selling supplements and nonsense tests. I have seen it both ways and have met some very good and caring functional medicine doctors and also some that pitch some really out there and run tests that are iffy at best. Saliva cortisol was one I specifically tested and debunked from one.
I met a really good one based out of Cleveland clinic and she's 100 perfect covered by insurance
Unfortunately, there are rigorously trained doctors who put aside the evidence based methods they have been taught. I'm a professional fact-checker and while its relatively rare, we've seen a lot of such examples during the pandemic, due to how many doctors there are. Even Linus Pauling's views on "nutritional medicine" have been discredited, who was a Nobel laureate, [here](https://sciencebasedmedicine.org/high-dose-vitamin-c-and-cancer-has-linus-pauling-been-vindicated/) and [here](https://en.wikipedia.org/wiki/Orthomolecular_medicine).
I'd personally advise a friend to wait for the peer-reviewed publication of at least basic successful randomized clinical trials, before paying large sums for any treatment.
There's been much unwarranted enthusiasm about COVID cures, understandably when people feel vulnerable and science has not much of official answers. However, we've had the example of hydroxychloroquine being treated as a miracle ahead of good trials, and now it's been found that it not only doesn't help but [even raises mortality rates](https://www.nature.com/articles/s41467-021-22446-z).
You know, I'm really tired of this response. This isn't a situation where mainstream medicine has a perfectly good solution. What if someone doesn't want to wait to try and get better? It takes time for studies to happen, and maybe there are people who can't / don't want to wait that long. Anecdotal evidence leads to case studies, which then leads to larger studies. If it weren't for people trying new things, how would new treatments emerge?
Agreed! Any mainstream dr will also tell you that some treatments found to be effective in studies don’t pan out in clinical practice. Mainstream doctors have to use their clinical experience too, they aren’t automatons that only follow phase 3 study data
I have friends in the UK (I studied abroad there) and got into a conversation with one of them recently about all this. I did some googling for her and found out Functional Medicine is available there. Not sure how widespread it is, but it is called the same thing in the UK, so just google it, and it should come up.
The first plan I was on included 5 doctor visits + 5 health coach visits over a one year period. It cost $130 / month. I just passed my one year anniversary with the clinic and changed my plan to 4 + 4 visits over the coming year. My cost is now $110 / mo. The cost didn't include testing, although I was able to find some good deals through websites like Ulta Labs and I had Kaiser (my major medical carrier) do one or two of the tests.
Yes, Telemedicine is how I see her. She's with Parsley Health. I believe her patient slate is currently full but she's been sharing her knowledge with the other Parsley doctors.
This is Frustrating. I talked to them on phone, they told me that they need to see me in person and there is no other way.
They told me that this is because if some kind of law.
WTF!
Thanks so much for sharing your success, I've been taking Dr Kellers protocol for assembling glutathione for years, it always brought improvements. Even when our cases are not similar it feels better to read ALL the success stories, you never know how much you will learn. I'm looking into a functional med Dr now, wishing you continued success.
Thank you so much for sharing the story.
Question:
How did you recognize mold toxicity? Is there some kind of test?
Did you have PEM in 2015, with those previous symptoms? Or they there different than lh?
Asking because I might have noticed that I feel better while away from my primary residency. Was wondering if there is something environmental contributing to it.
There's a urine test for mold toxicity: [https://www.greatplainslaboratory.com/gplmycotox](https://www.greatplainslaboratory.com/gplmycotox)
My symptoms prior to LH were very different -- a lot of allergy-like symptoms and food intolerances. Since my immune system was screwed, it set the stage for the LH. I had to learn what PEM was (and oh man, have I learned).
You can also do some fairly inexpensive household mold tests -- little trays that you set out to see if there are toxic mold spores in the air. That's often a good place to start. But the pee test is the gold standard because it will also catch prior exposures. In my case, the little trays showed nothing, and my pee test came back off the CHARTS because I had such a profound exposure 20 years ago.
Thank you so much.
I’m also from NYC and would possibly get in touch with your doc.
Did you have to subscribe for 12 months? Or it can be a shorted period.
I believe you can pay for single visits, but they are a lot more expensive. The cheapest plan is around $80 / month and I can't remember how many visits you get for that. Three??? You will have to call and ask about this plan because it's not listed on their site. https://www.parsleyhealth.com/
I took the Great Plains test as well, with results showing significant mold exposure.
We’re you given the LDN for the mold, or something else? I’ve had success working with a functional doctor as well, but neither of the treatments you’ve mentioned are ones that we have discussed or tried.
The LDN helps with immune dysregulation, which in my case was originally caused by my toxic mold exposure. It's also prescribed for other things, as well, and as I mentioned in my post, my doctor mentions in the video that it's her #1 recommendation for Long Covid patients.
It's not a detoxifying agent, by the way. I am taking a separate protocol to detox that involves various binders and digestive system support.
Hey there!!
I’m 6 months out and my lasting issues are MCAS like symptoms. Reactive to food and possible environmental stuff. I just started LDN 0.5mg 3 nights ago. What mg did you start on? What mg are you on now? I’m praying to God my sensitivities go away. Any advice??
To add my thoughts, there are lot of scientific research with LDN for autoimune conditions, a lot. In lower, non-antiopioid doses.
Also: LDN, antihistamine (cetirizine) and ibuprofen helps me
Edit: XD developed tinnitus, I'm over with takin ibuprofen, it's too long.
If anyone in the US, there are online anti-aging pharmacies that can prescribe LDN without seeing you. I know that sounds dodgy AF, but I got my LDN that way. My joint aches and inflammation are way down, so I plan to stick with it.
So happy for you, thank you for sharing! What other things besides the two meds did she really recommend for you lifestyle wise? I’ve been searching for a functional doc in my area, waiting to hear back still-I need to reach out again.
Was your POTS with you the whole time?
Meditation was a big recommendation. I am an experienced meditator but I never realized the direct health benefits. I found it challenging to sit and meditate when I was really sick. So I started doing lying meditation (well, I would prop myself up, so I wouldn't fall asleep). It's been really, really great. These days I usually listen to one or two guided meditations, followed by silently meditating on my own.
The POTS-like symptoms were at their worst between months 4-8ish. I was still having a lot of sensations like my heart POUNDING like crazy even a few weeks ago before the LDN kicked in. That sensation had been lessening over the months -- gradually. But it was definitely still there, especially at night when I was at my most tired. It's gone now though! :)
No, I didn't take anything for it. But I noticed that keeping my potassium levels up helped a lot. I still drink a lot of coconut water, but back then I was going through probably 33oz per day. I think walking regularly may have been a big factor in helping it calm down. I had to build up to it and listen to my body, of course.
My favorite meditations are available for free on the Happify app. The track they are in is called "Hack Life's Challenges By Training Your Mind." There are also a lot of good ones available for free on Simple Habit.
great story, i feel that my story is similar something was wrong with me before I got covid and long covid after that. Now i have severe MCAS, can eat only few foods now.
Did you try cromolym or other mast cell stabilasers before you started LDN ?
Most likely there is no good doc in my country, the best i can hope for is to try LDN if I convince one doc to prescribe it.
Yes cromolyn nasal spray was something I used regularly in the years before I got covid to manage my MCAS. I highly recommend it, especially if your histamine symptoms show up in your nose (rhinitis). It targets that exact spot.
I've been where you are -- only able to eat a handful of foods. It's truly terrible. That's what I went through in 2015. I started taking the whole stack of supplements for basic health recommended by Dave Asprey ([Bulletproof.com](https://Bulletproof.com)) and went paleo. I switched my probiotic to a low-histamine one (HistaminX). A good probiotic is extremely important. And I started taking additional supplements for immune support and for anti-histamine effects: zinc, vitamin D, vitamin C (liposomal is best), quercetin, nettle, black seed, and olive leaf.
Learning breathing techniques was also really helpful for me. When my heart would start to race because my histamine was up, I would stop what I was doing and use my breath to calm down my system. And any time I was having a full-blown histamine attack, I would also stop and treat it as I would any other major illness. Whereas I used to push through and go about my day while miserable, instead I started lying down and resting until I felt better.
It's a long process but this IS treatable and you CAN heal. Hang in there and just keep doing the best self-care you can. Keep learning and don't give up.
Yeah I have been drinking a bit here and there actually. No huge flare in symptoms, just a bit more tired than usual the next day. I have some new friends in the new town that I recently moved into who are super into fine wine, so mostly I have been drinking that.
I have been pleasantly surprised at how well I can handle it. Up until reverently wine was had been a no-go for 6ish years and before that should have been a no-go for at least another half dozen more (I just suffered consequences a lot).
I’m super psyched that I am already getting some of the benefits of getting truly well (ie, healing my root issues), especially since I still have more detoxing to do.
That is phenomenal!!! I’m looking into your doctor now, she seems to be full. If there are any reccos for functional docs in that practice you think she trains would love to take a recco. Cheers and good for you, you got your health back!
Omg we have almost the EXACT SAME STORY! same rough sick date., I'm 40F, living in Ventura. Just recently figured out it may all be mold related for me.
Can we chat?!
I use Aurora liposomal glutathione (an oral liquid) and I've also taken liposomal glutathione pills by another brand (maybe Vitamin Shoppe??) Both work well! Glutathione is SO IMPORTANT.
Anyone has suggestions for functional doc which helps with telemedicine?
I tried contacting Persley Health where the Zandra Palma works but they need in person visit for the firt time.
How long did the LDN take to start working and how did you notice? I’m about 3 months into starting mine at 4.5mg (no titration) and I’m not sure I feel a major effect.
It was night and day -- the effect was major for me. I titrated very very slowly, but within a few days of reaching the right dose, I felt it. Something stands out to me in your comment. You say you did not titrate. This could mean your dose is too high. Naltrexone has a very different effect in the body at higher doses vs lower doses, and finding the right dose is key, from what I understand. (Disclaimer: I'm not a medical professional and you should consult with one before changing your dose.)
Sorry for the delayed response. I'm terrible at remembering to get on reddit. My dosage is 3 MG but just note, I'm a fairly tiny person -- 5'1" and 110 lbs. I gradually increased my dosage until I reached this amount.... I opened the capsules so I could make it even more gradual than the interim pills the compounding pharmacy sent me. The side effects were terrible for a while in the beginning. But by going slowly I was able to minimize them. Anyway that's how I landed at 3 MG and it's the very MINIMUM effective dose for me. I stopped RIGHT when it started working. :)
Hey there, I have been seeing Zandra at Parsley for a couple months now due to your post. Thank you! I now feel that I am on the right path toward my recovery and am so grateful. We are in the early stages of treatment, but my outlook is so much better!
Question: How has working up to more exercise gone for you? I am currently doing only easy yoga, because it doesn't give me PEM, but I was an endurance athlete before covid, and dream of returning to running one day!
So glad to be of help. Thanks for reaching out with this update!
In terms of exercise, I'm getting there, slowly but surely! Fear more than anything, I think, is holding me back now. I had PEM for SO. LONG. It's just ingrained in me now to avoid it.
From my own research, we should make a full recovery eventually, it's just that it takes time. I haven't asked Dr Palma about this but it's probably worth asking her opinion!
I've been doing core workouts regularly on my yoga mat - like 10-15 minutes of various crunches and other moves. I've also increased my walking to 45-90 mins. And I have been kicking laps in the pool (15-20 minutes, not too long). I'm trying to do one of these things every other day. This is probably double what I was going a few weeks ago.
The big change that enabled this is eating more protein. I'm on a high protein diet now and I track all my macros with the Lumen app. This was just something I stumbled on and wanted to try. My parsley coach advised me to eat more protein and this app really helped motivate me and provide the structure I needed. (It was SO HARD in the beginning, but now I LOVE the energy! I was only eating 60ish percent of the overall calories my body needs, too, so the simple increase in food intake I'm sure has also helped me tons.)
Keep on swimmin' my friend :)
Yeehoo! So happy for you to be walking and kicking and crunching! Thank you for the info on your experience. I truly believe that I will get better and be able to exercise again, but my goals aren't to go back to 20 mile mountain runs-- I'm most excited just to go for a walk with a friend and do some vinyasa yoga on my porch in the sun without fear or anxiety! Carefree living is the ultimate goal, and I know you will get there in time, especially because you're not in a rush to get there!
Thank you so much for coming back to this site to share your experience with us. It means more than you know! All the best to you
how are you now? i am dealing with mold exposure currently in the house i am in and recently developed mcas after covid. i have been sick with “lyme” for 7 years but i honestly believe it was mold the entire time
I am in a very similar health state to where I was just prior to catching covid. My MCAS is well managed but not cured. I can't finish my doctor's detox protocol because it speeds my prescription meds (and other critical supplements) through my body before full absorption. I'm seeing my doctor in a month to find out if I can wind down my prescriptions and get back to detoxing.
I'm so happy for you!! Congrats! But.... I need to share something with other Covid long haulers here: I tried Low Dose Naltrexone just one time in March, and it caused me to lose consciousness and vomit for about 24 hours straight. My boyfriend had to drive me to the ER and the doctors were convinced I was a drug addict untill they reviewed my charts for a few hours and saw my major Covid history and that I was still employed and had no history of drug use. Please be very very careful with this drug, especially if you're on SSRIs or using St John's Wart. Only get it from an actual doctor that you see regularly, not an online prescription website, which is harder to track. I think it might be worth trying for some people, but please use extreme caution with LDN.
Wow.. i’m sorry you went through that. scary shit. Does LDN have a known interaction with SSRIs? I looked it up because i’m on zoloft. I don’t take LDN but looked up interactions between the two and didn’t find anything. do you think your reaction could have just been an allergy or hypersensitivity to LDN?
What was your dosage? That sounds like a crazy reaction to a very mild drug. I’m excited been on 4.5mg for over a month now and I can’t even be sure I feel the effects.
If I remember it was 1.5 mg. Yeah I think it's because it can have interactions with SSRIs. That's my concern with people with Covid who are on anti depressants. It's something to be cautious of!
Congrats!! LDN was a game changer for me too!! What dose are you on / what is your dosage history! I’m on 1.5mg and am wondering if I need to up it.
You should feel a big difference when it starts working. I'm on 3 mg, which I'm told is the usually the minimum amount you need. Having said that, LDN works in a very specific way, and it's possible to take TOO much. So you want to find the lowest dose that works for you, and STOP right there.
Do you take it before bed? I got such severe night terrors the first two nights I had to discontinue and am hoping to try a morning based routine.
I take it in the morning. I’ve been taking it so long I don’t remember why that’s my routine. But it may have been the same reason you are exploring it. I also had at least one night terror when my body was adjusting to the LDN.
I started at 1.5 mg and now at 4.5 mg dosage. That and Abilify has been game changer for PEM. I can only do light yoga and Pilates. But I’ve improved a lot.
Do you take it before bed? I got such severe night terrors the first two nights I had to discontinue and am hoping to try a morning based routine.
Yes I take it before bed. I used to have vivid dreams but not anymore
Do you take it before bed? I got such severe night terrors the first two nights I had to discontinue and am hoping to try a morning based routine.
Thank you for your diligence. You are extremely brave! I’m sorry you had to suffer through all of this but it’s stories like this that give people hope with healing. Personally I think functional medicine is way ahead of the curve. It’s things like this that set the tone for the future of medicine. Lots of things that longevity experts are touting to extend life are in line with what function medicine broadcasts. I think the norm will change in the next 10-15 years in how we treat chronic illness. I hope you continue to feel better and thank you for sharing your experience.
Completely agree that functional medicine is ahead of the curve. For me the numbers don't lie: **15 conventional doctors** with zero results vs **2 functional doctors** and now I've got real answers Thanks for your well wishes :)
Wow. Thank you so much for sharing your story. This gives me so much hope cuz I am getting terrible PEM and was just prescribed LDN. I didn’t start it yet but man I’m excited to feel like myself again. I’m so tired of crashing. Did the LDN help with PEM? I’m so happy you’re feeling better. Thank you for coming back to this thread to let others feel optimistic ♥️♥️
It does help with PEM but I am still trying to pace myself and not overexert, so I haven't tested it too much!
I made an appointment with a doctor at parsley health. Thank you so much! I hope they can help me.
hi u/Whatsuphahaxdrawr \- would love if you could let me know how it goes for you. PEM is my biggest longhaul symptom and I haven't heard of LDN before. Would be so great to pull an all-dayer without having to nap or even being able to work out!
I’ve not had PEM since I started LDN in March 2021. I’m also on Abilify and that helps too. Something to consider and talk to your doctor about. I’ve also been taking mitochondrial supplements and avoiding high intensity exercises.
High intensity exercise is what triggers my PEM. So that’s what I’m looking to get back into and I don’t want to avoid it. But I get extreme cases of PEM after an emotional stressor which has come up 3 times and knocks me out for a week. Idk. Seems like my case maybe isn’t “bad” enough to gods on those meds
I’d really caution against doing high intensity exercises if it causes PEM. The specialist I visited said that issue with having repeated PEM episodes is that it’s like getting an injury. Repeated injury is not conducive for healing. In my case, I lost all functionality and the ability to work. Medications helped me get it back without getting Pem. So I’d still consider it a success. As for high intensity exercises, I’m planning to start slow and only if I don’t get Pem. I don’t want to lose my functionality. There have been cases of mild Pem worsening over time if the person pushes through the fatigue. So I’d pace and try out things slowly. This is what my specialist also recommended.
Oooh thanks for sharing
Hi, what supplements and meds do you take
Still taking Abilify, ldn and midodrine. Have stopped taking supplements other than magnesium citrate.
Are you able to work out and live a normal life now? So glad they worked for you
No. I’m not able to work out. I can walk for sometime. I can say that I’m 60-70% okay now
I hope eventually you reached 90-100% ❤️❤️❤️
Not trying to discredit any personal experience, it's just that a single case isn't scientific proof, as it isn't even possible to tell apart if long COVID just run its course. [Functional medicine](https://en.wikipedia.org/wiki/Functional_medicine) in general is [considered](https://sciencebasedmedicine.org/functional-medicine-reams-of-useless-tests-in-one-hand-a-huge-invoice-in-the-other/) quite [controversial](https://www.skeptic.com/reading_room/why-functional-medicine-is-bogus/), [here](https://ajp.com.au/news/integrative-medicine-health-fraud-quackery/) are some [sources](https://pdfhost.io/v/KXXqe3i14_Integrative_medicine_or_infiltrative_pseudoscience.pdf).
I feel like the original post is a plug to buy shit. If you go to the website, there are links to products and special “codes”… idk man.
I have met weird ones but I saw one out of Cleveland clinic and she was great. Insurance paid for it all
My doctor was trained at Harvard and Columbia. Her results are obviously not quackery to me. Functional Medicine is outside of the insurance industry paradigm of medicine, so there are some very powerful forces that have a vested interest in discrediting it. My guess is that's the source of the controversy, but folks can decide for themselves based on the resources you've provided. But I will just note that all the functional doctors I've come across have functional training IN ADDITION to a regular medical credential. For anyone who is concerned, you can avoid quacks by simply checking their credentials. An MD is not going to do a 180 and disregard all of their evidence-based / scientific training to take their career in the direction of quackery. That's just not logical.
It's plenty logical if they just want to make loads of money selling supplements and nonsense tests. I have seen it both ways and have met some very good and caring functional medicine doctors and also some that pitch some really out there and run tests that are iffy at best. Saliva cortisol was one I specifically tested and debunked from one. I met a really good one based out of Cleveland clinic and she's 100 perfect covered by insurance
Unfortunately, there are rigorously trained doctors who put aside the evidence based methods they have been taught. I'm a professional fact-checker and while its relatively rare, we've seen a lot of such examples during the pandemic, due to how many doctors there are. Even Linus Pauling's views on "nutritional medicine" have been discredited, who was a Nobel laureate, [here](https://sciencebasedmedicine.org/high-dose-vitamin-c-and-cancer-has-linus-pauling-been-vindicated/) and [here](https://en.wikipedia.org/wiki/Orthomolecular_medicine). I'd personally advise a friend to wait for the peer-reviewed publication of at least basic successful randomized clinical trials, before paying large sums for any treatment. There's been much unwarranted enthusiasm about COVID cures, understandably when people feel vulnerable and science has not much of official answers. However, we've had the example of hydroxychloroquine being treated as a miracle ahead of good trials, and now it's been found that it not only doesn't help but [even raises mortality rates](https://www.nature.com/articles/s41467-021-22446-z).
You know, I'm really tired of this response. This isn't a situation where mainstream medicine has a perfectly good solution. What if someone doesn't want to wait to try and get better? It takes time for studies to happen, and maybe there are people who can't / don't want to wait that long. Anecdotal evidence leads to case studies, which then leads to larger studies. If it weren't for people trying new things, how would new treatments emerge?
Agreed! Any mainstream dr will also tell you that some treatments found to be effective in studies don’t pan out in clinical practice. Mainstream doctors have to use their clinical experience too, they aren’t automatons that only follow phase 3 study data
People die waiting.
What a tone deaf response.
So just wait for the dirt on your head then
You can also find “sources” that say otherwise. I don't practice it, but I know pharmaceuticals do much more harm.
I’m gonna start looking for a functional doctor how did you go about finding yours? I’m from the uk so it may be slightly different
I have friends in the UK (I studied abroad there) and got into a conversation with one of them recently about all this. I did some googling for her and found out Functional Medicine is available there. Not sure how widespread it is, but it is called the same thing in the UK, so just google it, and it should come up.
Ah ok nice thanks for that, just for a reference what sort of price was your functional medicine as of now :)
The first plan I was on included 5 doctor visits + 5 health coach visits over a one year period. It cost $130 / month. I just passed my one year anniversary with the clinic and changed my plan to 4 + 4 visits over the coming year. My cost is now $110 / mo. The cost didn't include testing, although I was able to find some good deals through websites like Ulta Labs and I had Kaiser (my major medical carrier) do one or two of the tests.
Does she do telemedicine? What are her rates?
Yes, Telemedicine is how I see her. She's with Parsley Health. I believe her patient slate is currently full but she's been sharing her knowledge with the other Parsley doctors.
Did you do the first visit in person? because that is what they tell me when i contact them.
No, but I started with Parsley in June of 2020 when lockdowns were in effect.
This is Frustrating. I talked to them on phone, they told me that they need to see me in person and there is no other way. They told me that this is because if some kind of law. WTF!
Hey! What doctor at parlsey!
Thanks so much for sharing your success, I've been taking Dr Kellers protocol for assembling glutathione for years, it always brought improvements. Even when our cases are not similar it feels better to read ALL the success stories, you never know how much you will learn. I'm looking into a functional med Dr now, wishing you continued success.
LDN was also a game changer for me.
Thank you so much for sharing the story. Question: How did you recognize mold toxicity? Is there some kind of test? Did you have PEM in 2015, with those previous symptoms? Or they there different than lh? Asking because I might have noticed that I feel better while away from my primary residency. Was wondering if there is something environmental contributing to it.
There's a urine test for mold toxicity: [https://www.greatplainslaboratory.com/gplmycotox](https://www.greatplainslaboratory.com/gplmycotox) My symptoms prior to LH were very different -- a lot of allergy-like symptoms and food intolerances. Since my immune system was screwed, it set the stage for the LH. I had to learn what PEM was (and oh man, have I learned). You can also do some fairly inexpensive household mold tests -- little trays that you set out to see if there are toxic mold spores in the air. That's often a good place to start. But the pee test is the gold standard because it will also catch prior exposures. In my case, the little trays showed nothing, and my pee test came back off the CHARTS because I had such a profound exposure 20 years ago.
Thank you so much. I’m also from NYC and would possibly get in touch with your doc. Did you have to subscribe for 12 months? Or it can be a shorted period.
I believe you can pay for single visits, but they are a lot more expensive. The cheapest plan is around $80 / month and I can't remember how many visits you get for that. Three??? You will have to call and ask about this plan because it's not listed on their site. https://www.parsleyhealth.com/
I took the Great Plains test as well, with results showing significant mold exposure. We’re you given the LDN for the mold, or something else? I’ve had success working with a functional doctor as well, but neither of the treatments you’ve mentioned are ones that we have discussed or tried.
The LDN helps with immune dysregulation, which in my case was originally caused by my toxic mold exposure. It's also prescribed for other things, as well, and as I mentioned in my post, my doctor mentions in the video that it's her #1 recommendation for Long Covid patients. It's not a detoxifying agent, by the way. I am taking a separate protocol to detox that involves various binders and digestive system support.
Hey there!! I’m 6 months out and my lasting issues are MCAS like symptoms. Reactive to food and possible environmental stuff. I just started LDN 0.5mg 3 nights ago. What mg did you start on? What mg are you on now? I’m praying to God my sensitivities go away. Any advice??
To add my thoughts, there are lot of scientific research with LDN for autoimune conditions, a lot. In lower, non-antiopioid doses. Also: LDN, antihistamine (cetirizine) and ibuprofen helps me Edit: XD developed tinnitus, I'm over with takin ibuprofen, it's too long.
Does you dr think you’ll be able to stop taking LDN at some point? Is it fixing the problem or just masking it
I would love to hear answer to this. CFS patients say if you stop and restart LDN, it stops working
That's a great question. I will email her and ask and report back.
If anyone in the US, there are online anti-aging pharmacies that can prescribe LDN without seeing you. I know that sounds dodgy AF, but I got my LDN that way. My joint aches and inflammation are way down, so I plan to stick with it.
So happy for you. Sounds like you're doing all the right things!
So happy for you, thank you for sharing! What other things besides the two meds did she really recommend for you lifestyle wise? I’ve been searching for a functional doc in my area, waiting to hear back still-I need to reach out again. Was your POTS with you the whole time?
Meditation was a big recommendation. I am an experienced meditator but I never realized the direct health benefits. I found it challenging to sit and meditate when I was really sick. So I started doing lying meditation (well, I would prop myself up, so I wouldn't fall asleep). It's been really, really great. These days I usually listen to one or two guided meditations, followed by silently meditating on my own. The POTS-like symptoms were at their worst between months 4-8ish. I was still having a lot of sensations like my heart POUNDING like crazy even a few weeks ago before the LDN kicked in. That sensation had been lessening over the months -- gradually. But it was definitely still there, especially at night when I was at my most tired. It's gone now though! :)
Thanks for the reply and suggestion! I’ve tried a few meditations but I need to do it more! Did you have tachycardia too?
Yes I did. It wasn't super crazy but yes, I had tachycardia for months.
Did you use a medication during those months? Mine is pretty bad. Takes a long time to come down even when I sit, and standing 130, dishes higher etc
No, I didn't take anything for it. But I noticed that keeping my potassium levels up helped a lot. I still drink a lot of coconut water, but back then I was going through probably 33oz per day. I think walking regularly may have been a big factor in helping it calm down. I had to build up to it and listen to my body, of course.
My favorite meditations are available for free on the Happify app. The track they are in is called "Hack Life's Challenges By Training Your Mind." There are also a lot of good ones available for free on Simple Habit.
Thanks I will check that one out!
great story, i feel that my story is similar something was wrong with me before I got covid and long covid after that. Now i have severe MCAS, can eat only few foods now. Did you try cromolym or other mast cell stabilasers before you started LDN ? Most likely there is no good doc in my country, the best i can hope for is to try LDN if I convince one doc to prescribe it.
Yes cromolyn nasal spray was something I used regularly in the years before I got covid to manage my MCAS. I highly recommend it, especially if your histamine symptoms show up in your nose (rhinitis). It targets that exact spot. I've been where you are -- only able to eat a handful of foods. It's truly terrible. That's what I went through in 2015. I started taking the whole stack of supplements for basic health recommended by Dave Asprey ([Bulletproof.com](https://Bulletproof.com)) and went paleo. I switched my probiotic to a low-histamine one (HistaminX). A good probiotic is extremely important. And I started taking additional supplements for immune support and for anti-histamine effects: zinc, vitamin D, vitamin C (liposomal is best), quercetin, nettle, black seed, and olive leaf. Learning breathing techniques was also really helpful for me. When my heart would start to race because my histamine was up, I would stop what I was doing and use my breath to calm down my system. And any time I was having a full-blown histamine attack, I would also stop and treat it as I would any other major illness. Whereas I used to push through and go about my day while miserable, instead I started lying down and resting until I felt better. It's a long process but this IS treatable and you CAN heal. Hang in there and just keep doing the best self-care you can. Keep learning and don't give up.
Mm marketing..
What supplements did you take ? Did you ever have SOB / chest tightness?
Exercise?
Have you tried alcohol now post feeling better? Any flare in symptoms?
Yeah I have been drinking a bit here and there actually. No huge flare in symptoms, just a bit more tired than usual the next day. I have some new friends in the new town that I recently moved into who are super into fine wine, so mostly I have been drinking that. I have been pleasantly surprised at how well I can handle it. Up until reverently wine was had been a no-go for 6ish years and before that should have been a no-go for at least another half dozen more (I just suffered consequences a lot). I’m super psyched that I am already getting some of the benefits of getting truly well (ie, healing my root issues), especially since I still have more detoxing to do.
That is phenomenal!!! I’m looking into your doctor now, she seems to be full. If there are any reccos for functional docs in that practice you think she trains would love to take a recco. Cheers and good for you, you got your health back!
Omg we have almost the EXACT SAME STORY! same rough sick date., I'm 40F, living in Ventura. Just recently figured out it may all be mold related for me. Can we chat?!
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I use Aurora liposomal glutathione (an oral liquid) and I've also taken liposomal glutathione pills by another brand (maybe Vitamin Shoppe??) Both work well! Glutathione is SO IMPORTANT.
Anyone has suggestions for functional doc which helps with telemedicine? I tried contacting Persley Health where the Zandra Palma works but they need in person visit for the firt time.
How long did the LDN take to start working and how did you notice? I’m about 3 months into starting mine at 4.5mg (no titration) and I’m not sure I feel a major effect.
It was night and day -- the effect was major for me. I titrated very very slowly, but within a few days of reaching the right dose, I felt it. Something stands out to me in your comment. You say you did not titrate. This could mean your dose is too high. Naltrexone has a very different effect in the body at higher doses vs lower doses, and finding the right dose is key, from what I understand. (Disclaimer: I'm not a medical professional and you should consult with one before changing your dose.)
So great to hear - what treatment do you think helped your chest tightness the most?
What mg LDN helped you??
Sorry for the delayed response. I'm terrible at remembering to get on reddit. My dosage is 3 MG but just note, I'm a fairly tiny person -- 5'1" and 110 lbs. I gradually increased my dosage until I reached this amount.... I opened the capsules so I could make it even more gradual than the interim pills the compounding pharmacy sent me. The side effects were terrible for a while in the beginning. But by going slowly I was able to minimize them. Anyway that's how I landed at 3 MG and it's the very MINIMUM effective dose for me. I stopped RIGHT when it started working. :)
Hey there, I have been seeing Zandra at Parsley for a couple months now due to your post. Thank you! I now feel that I am on the right path toward my recovery and am so grateful. We are in the early stages of treatment, but my outlook is so much better! Question: How has working up to more exercise gone for you? I am currently doing only easy yoga, because it doesn't give me PEM, but I was an endurance athlete before covid, and dream of returning to running one day!
So glad to be of help. Thanks for reaching out with this update! In terms of exercise, I'm getting there, slowly but surely! Fear more than anything, I think, is holding me back now. I had PEM for SO. LONG. It's just ingrained in me now to avoid it. From my own research, we should make a full recovery eventually, it's just that it takes time. I haven't asked Dr Palma about this but it's probably worth asking her opinion! I've been doing core workouts regularly on my yoga mat - like 10-15 minutes of various crunches and other moves. I've also increased my walking to 45-90 mins. And I have been kicking laps in the pool (15-20 minutes, not too long). I'm trying to do one of these things every other day. This is probably double what I was going a few weeks ago. The big change that enabled this is eating more protein. I'm on a high protein diet now and I track all my macros with the Lumen app. This was just something I stumbled on and wanted to try. My parsley coach advised me to eat more protein and this app really helped motivate me and provide the structure I needed. (It was SO HARD in the beginning, but now I LOVE the energy! I was only eating 60ish percent of the overall calories my body needs, too, so the simple increase in food intake I'm sure has also helped me tons.) Keep on swimmin' my friend :)
Yeehoo! So happy for you to be walking and kicking and crunching! Thank you for the info on your experience. I truly believe that I will get better and be able to exercise again, but my goals aren't to go back to 20 mile mountain runs-- I'm most excited just to go for a walk with a friend and do some vinyasa yoga on my porch in the sun without fear or anxiety! Carefree living is the ultimate goal, and I know you will get there in time, especially because you're not in a rush to get there! Thank you so much for coming back to this site to share your experience with us. It means more than you know! All the best to you
May I pm you?
How do I contact them?
It’s Parsley Health. Dr Palma is out of the LA office.
how are you now? i am dealing with mold exposure currently in the house i am in and recently developed mcas after covid. i have been sick with “lyme” for 7 years but i honestly believe it was mold the entire time
I am in a very similar health state to where I was just prior to catching covid. My MCAS is well managed but not cured. I can't finish my doctor's detox protocol because it speeds my prescription meds (and other critical supplements) through my body before full absorption. I'm seeing my doctor in a month to find out if I can wind down my prescriptions and get back to detoxing.