The FLCCC doctors are the experts, and have been trying various long Covid treatments. I started very very sick with Covid Jan.2022- oxygen dropped to 89%, heart rate 130. I followed their early treatment protocol with the “i” medication, and took the dog on 2 walks on day 3. 100% at day7.
I have a comprehensive document with a laundry list of beneficial interventions or treatments. EBOO/Ozone helped with my inflammation, IVIG helps modestly, Guanfacine helps with excess sympathetic activity when upright/standing, prednisone helps aspects of inflammation, sleep is critical to mitigating symptoms, also, Klonopin has helped with stiffness and burning (MCAS stabilizer, too), HBOT was also a limited benefit, and I was authorized compassion access to stem cells…still waiting on Uplizna infusion (B-Cell drug akin to Rituxan). Physical therapy has not helped.
I'm imagining an intro where you say "yooooo what's going on everybody, it's ya boi Jarred back again with some exciting news about long covid [airhorn pepepe-pewwwww]"
I would submit something on Japanese raisin tree extract as an ALDH2 activator, but I' not an LC patient or caregiver. I became interested in LC since my daughter has ME and like many in the ME community I realized fairly early in the pandemic that something like Long Covid could emerge. Sadly, we were right. But I noticed some things that seem specific to LC, symptoms that suggested that toxic aldehydes were an issue. At least one major LC study found that a subset of pts. have increased levels of malondialdehyde.
One more for your list. :) I have had ME since around age 4, following a bout of flu. In the first two months of my recovery from covid, I noticed that while I was having issues fighting off infections, my hair was beginning to grow back, my voice had better tone (which often happens during remission events, for me), and generally things improved before LC hit me hard. I have found relief in treating b12 deficiency according to the guide found on r/b12_deficiency, and it seems there are quite a few people there who have long covid finding similar benefits. My feeling is that, at least in my case, there’s an immune aspect that’s preventing me from using b12 and it’s associated Co-factors properly. I know one of your colleagues in the neural working group has seen research showing b12 is depleted in spinal fluid, and that there is another recent paper identifying an immune condition which limits b12 entering the spinal fluid. I wonder if something quite useful may come of that in LC and ME. I don’t think this is the only moving part of the/my condition, but it’s made the biggest impact on me so far. Wishing you luck and energy as ever!
PS. You may be interested to know that taking b12, at least for me, treated a ‘pumping’ sensation in my neck and head. Fluid seems to move much more freely, at least when I move up a dose.
Having some first hand experience with sustained brain inflammation, as seen in long covid, I have a pretty good idea of what works. The trick is not to address the inflammation directly (which in case of long covid should go away eventually, if slowly), but its effects, ironically (like the one time treating symptoms is the right approach). The sustained brain inflammation triggering cfs type symptoms (and others, depending on brain location) like in long covid is because of reduced acetylcholine production and utilization in the brain. Mainly because of suspension of TRH hormone production. Sub 400mg doses of piracetam is a substitute. Has to be taken with choline supplements. Also large doses of Taurine (in the several g's) helps because it reduces need for choline.
Thanks. This fits in with some of the things I am seeing in the brain. Inflammation manifested as lactate, abnormal choline levels (unfortunately, there is no scan I know of for acetylcholine), and poor cerebral perfusion. I can use piracetam in a research protocol, but I think it is hard to get as a patient (in the U.S., at least). - Jarred Younger
Thank you, I am South African but I will go onto your site. My fibromyalgia has disappeared on LDN. I still have fatigue days, but I can usually track it to something that I have eaten. I watch my diet very carefully. I also went for Sacrocranial therapy and it was magic with rebalancing the nervous system. I still have days where I feel tired. I have read enough on MCAS to understand the inflammatory effect of diet.
I heard about the weather in San Francisco yesterday - I'm sure it was much hotter in other parts of CA. But the sweater is just for indoors for me, unfortunately. The central air (which we don't control) has been running really cold for a while. - Jarred Younger
I will also say that I have severe ongoing pain issues after getting over COVID, mostly related to my shoulder and arm. Gabapentin sees to help with that. But I can't prove it is related to COVID.
Ive had ME for 40 years after having GBS as a 3 year old. I also have hypersomnia which seems to be common in long covid too. I took modafinil for 10 years, for the first 3 or 4 years it was like a miracle drug. But unfortunately the effects of it stopped working. Modafinil has a lot of interesting mechnisms. Ive also tried viagra that had a mild benefits on me, although i bought that privately and unsupervised. I took that because it was shown to reduce dementia risk, so i figured that it might be increasing blood flow to the brain.
Interestingly, I learned I have a molybdenum deficiency…began supplementing about a week ago so too early to tell anything but it’s on top of copper deficiency, anemia, and many others my immune dysfunction per LC and CFS/ME and Post Viral Illness Immune System evasion involving EBV, cmv, hhv6, hsv1, different pneumonias, Lyme, rmsf, and more is from genetic predisposition likely in my case homozygous tnfrsf13b deficiency. It is something nih needs to look at…c.542 c>a along with a wnk1 mutation…
I hope the treatment works -- I imagine you were given a prescription molybdenum supplement. This is definitely the type of condition that can evade detection unless genetic tests are performed. I hope at some point, a full genomic/proteomic scan is available for all patients with chronic symptoms. - Jarred Younger
@@youngerlab It would be nice if someone would help me out like that in terms of my care team. I am in large part on my own because of the complexity of my case. The Mo was measured twice, at different times, at different labs, no detectable amount either time. The supplement I found online that I am taking says it has 200 mcg per serving which is a lot, but I don't typically absorb enough of anything that I take so I am hoping to retest again at a time in the near future to monitor progress. The weird thing is that cofactor deficiency related to it is something that is detected near birth....mine is acquired in adulthood. Cu and Mo are not that far apart on the period table. I have not delved into it enough to, haven't had the mental capacity, to be able to understand potential linkages there or what other metals (i.e. heavy metals) could be interfering as well. If you would ever be open to it, or have any time to do so, maybe I could do a 5 minute or 10 minute interview with you on my TH-cam channel. There are lots of ppl like me out there that need hope. Thank you for inspiring hope for those of us left behind, and not thought of by the majority of the research world.
Thank the Lord you are still looking into this. You had not posted in a while; I thought you had lost interest. Some how I found you soon after the a certain voluntary event in the arm.
For me French Maritime Pine Bark Extract was a major game changer for the brain fog associated with my Long Covid ME/CFS. I still am fatigued but this manages my brain fog very well.
Could glp-1 agonist drugs really, potentially help with brain inflammation as the recent hype about it suggests? Read a lot of surprisingly positive experiences...
Question: I don’t know where else to ask a question off topic. If microglia cells are in large part the reason ME/CFS is perpetuated then why are many of the accompanying symptoms not present during a normal cycle of a virus? Myoclonus, non-fulfilling sleep… Thank you
This is great news & refreshing to hear. My doc will only prescribe stimulants for 5 months of what appears to be CFS. I don’t know if I’m on a lucky streak for 2 weeks feeling good but I did start *oxaloacetate 2 weeks ago. Correlation or causation? I have a list of more drugs once it returns: viagra, psilocybin, LDN, Mirapex, Rapacymin & Ketamine. Will buy other drugs after this & may try some supplements. I did have a viral thing in April.
Interesting one - this sounds like something Laurel Crosby at Stanford would want to hear about. I think she has some hypotheses focused on citric acid and related cycles. - Jarred Younger
May I ask if you can do a video on the Itaconate Shunt hypothesis? I'm curious what other researchers who work on ME view it. It seems so essential to me, but I rarely hear it mentioned, and I wonder if it's because you disagree or are disinterested, or because it's so obvious where it fits with your work, etc?
May I ask is that because of all the horrible compounds used to amend the soil and build up in our bodies and leading to the lack of our red blood cells to properly carry oxygen? Greetings by the way back to you in the Netherlands.
My long COVID most certainly came not from getting COVID (I did not get COVID), but from the repeated mRNA vaccines (5 of them). For me, the most helpful treatment did not come from my doctor- he would not even acknowledge that I had a vaccine injury and therefore offered only Gabapentin which made things so much worse. I went online and then decided to pursue a course of Augmented NAC (that I had to order from Europe) coupled with Nattokinase to address the accumulated spike protein and micro-clots that I suspect were the culprits wreaking havoc in my body- causing lots of inflammation, heart palpitations, vascular and muscle spasms, peripheral neuropathy, brain fog and histamine intolerance. After 4 months on these supplements, I was able to see real improvement. I also had to stay on a fairly strict low-histamine diet for almost a year. Finally, because the long COVID was so painful and traumatic, I recently pursued some mind-body approaches to managing the nociceptive pain that developed because this all went on for 2 years and turned my life upside down. Don't discount how valuable the latter was.
@@youngerlabthey need to understand mcas at a very deep level and develop new drugs.all this stuff is sticking plasters. Astralagus, broccoli seed extract, black seed oil, cacaou, . The list is never ending but they need to find the root because I've tried this stuff over decades and they work for a while. Beta blockers and Zoloft are great. Diaezepam very helpful. Any anti sntinflammatory is good. Mast cell stabilisers are really good...but again you return to some kind of weird baseline. It's like we're just dealing with oxidative stress and mcas..but why is this happening
Hi Jarrad , I have ME/CFS and hypermobility . Had it 40 years . Somehow the switch has been switched by getting covid ! I mask up still . Subsequent vaccine also helped . ( first 2 were hard work ) . I sleep now ! Wake refreshed . I can do light exercise at the gym ( prior I couldn’t just drive to the gym ) . I am v careful still esp with good or bad stress and when I feel my body going into any kind of overdrive . The minute my sleep gets altered I pull right back . Gone from a 5 to an 8 and that’s a big leap . The exact same thing happened with appendix surgery . That time the whole illness seeped back in one morning . I’m now concentrating on the pots side of things . Best drug prior to that was propranolol which I continue to take as it helps sleep and no one will give me ivabradine to control heart rate during the day . I will sometimes take 5 mg to quell heart rate in what my body has perceived as stress and the adrenalin goes over board . Weirdly , I also find nsaids v useful and I don’t think it’s only for pain , but don’t know .
The winning therapies will be those most profitable for pharmaceutical companies. If it makes them billions and has horrid side effects it will become the recommended drug/therapy of choice and the only ones covered by insurance.
Have you done a video talking about Guanfacine and N-acetylcysteine as treatment for brain fog and cognitive dysfunction in long covid patients? I'm diagnosed with ME/CFS, so anything that could be used to treat the brain fog etc. experienced by long covid patients is very interesting to me.
@@IZombi-mx9lsnice it helped you. I have had it since 1991 and those diets did nothing in the long run. Our brain in Cf/ME becomes essentially continually stimulated ( the neurons) unnecessarily and when the brain runs out of glucose which the fastest source is sugar, starches it then turns to protein and fat and if forced to just use protein only in those diets it in fact has the potential to put one such as myself comatose.
@@ninner196 sorry to say that, but it seems you have no idea that the brain prefers ketones for fuel and it's limitless energy if you are in ketosis because your liver produces it constantly.
I'd like to see a study of NAC for LC since it could help with the microclots. NAC has been found to reduce the size of von Willebrand factor multimers - which I think has been implicated in LC microclots. NAC has a lot of other interesting activities as well.
@@ninner196 You should watch the interview on the Anthony Chaffe channel: The hard science of your metabolism on keto, carnivore and carbs with Dr Bikman
Dr Younger, I really think the poisoning of the food supply in America is a big factor that isn’t being addressed. How can our bodies adequately heal when the food that we are eating is often saturated with toxic chemicals that are banned in other countries? For example, our grains are sprayed with glyphosate to dry them out for harvesting. Even if a treatment is effective, the ongoing poisoning of our bodies is going to cause problems eventually. I literally feel my best when I don’t eat for a couple days. As a thin person, this is not sustainable but it did make me realize that there’s something seriously wrong with our food. And that’s why it’s even banned in some countries. We have to ban these pesticides and food additives that are banned in Europe for good reason.
Has hemoglobin from marine worm been tried? It's a much better oxygen carrier than human hemoglobin and much smaller which means it can get anywhere in the body even places where normal blood red cells cannot so any oxygenation deficiency could likely be countered with it.
That would make good sense for someone with chronically suppressed blood oxygen levels. I don't know if someone has tried it in long-term symptoms after the acute infection has resolved. - Jarred Younger
@@youngerlab I have normal blood levels of everything that is typically checked. High C3a and C4a cause vaso constriction. Nicotinic Acid causes vaso dilation and restores mitochondria function. Typically something is disrupting the mito respiratory chain. Depending on what complex is affected, Niacin could help. Other complexes could be helped by methylene blue. You have to do a mito swab and find out which complexes are begin disrupted to determine which solution.
@@leondevries478hi there. No it's not the same. It's a version of vitamin B3. It can be bought online and is very cheap. There are several forms of B3. Make sure it's nicotinic acid. Can cause drop in blood pressure, and other side effects at high doses. Start with 100mg and work up slowly. Use under Dr supervision
If you are not able to address the mold issue and probably 99% are not from my experience none of the other things will make a noticable difference. First and foremost Mold avoidance. IE avoid mold found in water damaged buildings air conditioners, ducting, don't worry about all the other BS like contamination, throwing away all your belongings mycotoxins detoxing, cutting your hair all that other trash. This is of course easier said than done because even brand new houses can and do have these types of issues why I live in a metal building. Stay away from alcohol, Tobacco, weed, medications, drugs, coffee, sugar, excessive and or unhealthy fats, excessive vitamins, licenced or un-licensed IV jerks who want to put some type of magic potion directly into your veins, perfumes, chemicals, smoke, high levels of pollution. No wacky unsustainable diets like carnivore or keto. Calorie restriction, intermittent fasting, eat 2 meals at the same time of day in a 6 hour window, at least 6 hours before bed. Go to bed and get up at the same time every day (as much as possible) pay attention to your circadian rhythm in other words. Eat small amounts of a wide variety of quality foods in the hopes of reducing sensitivity to any one. IE vegetables, potatoes, rice, beans, meat, fruit, nuts grains exactly what is described in the food pyramid. Gluten avoidance Exercise and activity as much as possible. If you think you are going to have insomnia more, if you are crashing from PEM less. Avoid toxic parasitic people who have no desire to understand you situation and who try to make your condition about your character. Don't let them take up any space in your head.
"We've tried nothing and we're all out of ideas!"
Thanks for the heads up. Desperate people with LC & CFS and forgotten in society among diseases. We appreciate you!
The FLCCC doctors are the experts, and have been trying various long Covid treatments. I started very very sick with Covid Jan.2022- oxygen dropped to 89%, heart rate 130. I followed their early treatment protocol with the “i” medication, and took the dog on 2 walks on day 3. 100% at day7.
I have a comprehensive document with a laundry list of beneficial interventions or treatments. EBOO/Ozone helped with my inflammation, IVIG helps modestly, Guanfacine helps with excess sympathetic activity when upright/standing, prednisone helps aspects of inflammation, sleep is critical to mitigating symptoms, also, Klonopin has helped with stiffness and burning (MCAS stabilizer, too), HBOT was also a limited benefit, and I was authorized compassion access to stem cells…still waiting on Uplizna infusion (B-Cell drug akin to Rituxan). Physical therapy has not helped.
I'm imagining an intro where you say "yooooo what's going on everybody, it's ya boi Jarred back again with some exciting news about long covid [airhorn pepepe-pewwwww]"
Why?
Why not? We all need a bit of humor
There is no way the health authorities ran out of ideas 😂
I am the patient. How the hell am I supposed to tell the NIH what to do?
I would submit something on Japanese raisin tree extract as an ALDH2 activator, but I' not an LC patient or caregiver. I became interested in LC since my daughter has ME and like many in the ME community I realized fairly early in the pandemic that something like Long Covid could emerge. Sadly, we were right. But I noticed some things that seem specific to LC, symptoms that suggested that toxic aldehydes were an issue. At least one major LC study found that a subset of pts. have increased levels of malondialdehyde.
You give me hope
One more for your list. :)
I have had ME since around age 4, following a bout of flu. In the first two months of my recovery from covid, I noticed that while I was having issues fighting off infections, my hair was beginning to grow back, my voice had better tone (which often happens during remission events, for me), and generally things improved before LC hit me hard. I have found relief in treating b12 deficiency according to the guide found on r/b12_deficiency, and it seems there are quite a few people there who have long covid finding similar benefits.
My feeling is that, at least in my case, there’s an immune aspect that’s preventing me from using b12 and it’s associated Co-factors properly. I know one of your colleagues in the neural working group has seen research showing b12 is depleted in spinal fluid, and that there is another recent paper identifying an immune condition which limits b12 entering the spinal fluid. I wonder if something quite useful may come of that in LC and ME.
I don’t think this is the only moving part of the/my condition, but it’s made the biggest impact on me so far. Wishing you luck and energy as ever!
PS. You may be interested to know that taking b12, at least for me, treated a ‘pumping’ sensation in my neck and head. Fluid seems to move much more freely, at least when I move up a dose.
*created, not treated
Having some first hand experience with sustained brain inflammation, as seen in long covid, I have a pretty good idea of what works. The trick is not to address the inflammation directly (which in case of long covid should go away eventually, if slowly), but its effects, ironically (like the one time treating symptoms is the right approach). The sustained brain inflammation triggering cfs type symptoms (and others, depending on brain location) like in long covid is because of reduced acetylcholine production and utilization in the brain. Mainly because of suspension of TRH hormone production.
Sub 400mg doses of piracetam is a substitute. Has to be taken with choline supplements.
Also large doses of Taurine (in the several g's) helps because it reduces need for choline.
Thanks. This fits in with some of the things I am seeing in the brain. Inflammation manifested as lactate, abnormal choline levels (unfortunately, there is no scan I know of for acetylcholine), and poor cerebral perfusion. I can use piracetam in a research protocol, but I think it is hard to get as a patient (in the U.S., at least). - Jarred Younger
How do you know ?
Thank you, I am South African but I will go onto your site. My fibromyalgia has disappeared on LDN. I still have fatigue days, but I can usually track it to something that I have eaten. I watch my diet very carefully. I also went for Sacrocranial therapy and it was magic with rebalancing the nervous system. I still have days where I feel tired. I have read enough on MCAS to understand the inflammatory effect of diet.
Looks like you’re getting to enjoy sweater weather. Unfortunately, here in CA, we’re having 100 degree days still 😩. Anyway, have a good week!
I heard about the weather in San Francisco yesterday - I'm sure it was much hotter in other parts of CA. But the sweater is just for indoors for me, unfortunately. The central air (which we don't control) has been running really cold for a while. - Jarred Younger
That’s a bummer. Yeah, I’m about 1.5 hrs a little northeast of sf in Sacramento
I will also say that I have severe ongoing pain issues after getting over COVID, mostly related to my shoulder and arm. Gabapentin sees to help with that. But I can't prove it is related to COVID.
Wouldn't it be "better" to find biological markers to test for first then try different treatments?
Ive had ME for 40 years after having GBS as a 3 year old. I also have hypersomnia which seems to be common in long covid too. I took modafinil for 10 years, for the first 3 or 4 years it was like a miracle drug. But unfortunately the effects of it stopped working. Modafinil has a lot of interesting mechnisms. Ive also tried viagra that had a mild benefits on me, although i bought that privately and unsupervised. I took that because it was shown to reduce dementia risk, so i figured that it might be increasing blood flow to the brain.
Interestingly, I learned I have a molybdenum deficiency…began supplementing about a week ago so too early to tell anything but it’s on top of copper deficiency, anemia, and many others my immune dysfunction per LC and CFS/ME and Post Viral Illness Immune System evasion involving EBV, cmv, hhv6, hsv1, different pneumonias, Lyme, rmsf, and more is from genetic predisposition likely in my case homozygous tnfrsf13b deficiency. It is something nih needs to look at…c.542 c>a along with a wnk1 mutation…
I hope the treatment works -- I imagine you were given a prescription molybdenum supplement. This is definitely the type of condition that can evade detection unless genetic tests are performed. I hope at some point, a full genomic/proteomic scan is available for all patients with chronic symptoms. - Jarred Younger
@@youngerlab It would be nice if someone would help me out like that in terms of my care team. I am in large part on my own because of the complexity of my case. The Mo was measured twice, at different times, at different labs, no detectable amount either time. The supplement I found online that I am taking says it has 200 mcg per serving which is a lot, but I don't typically absorb enough of anything that I take so I am hoping to retest again at a time in the near future to monitor progress. The weird thing is that cofactor deficiency related to it is something that is detected near birth....mine is acquired in adulthood. Cu and Mo are not that far apart on the period table. I have not delved into it enough to, haven't had the mental capacity, to be able to understand potential linkages there or what other metals (i.e. heavy metals) could be interfering as well. If you would ever be open to it, or have any time to do so, maybe I could do a 5 minute or 10 minute interview with you on my TH-cam channel. There are lots of ppl like me out there that need hope. Thank you for inspiring hope for those of us left behind, and not thought of by the majority of the research world.
Thank the Lord you are still looking into this. You had not posted in a while; I thought you had lost interest. Some how I found you soon after the a certain voluntary event in the arm.
For me French Maritime Pine Bark Extract was a major game changer for the brain fog associated with my Long Covid ME/CFS. I still am fatigued but this manages my brain fog very well.
I hope to do more maritime pine bark research soon. It is a really interested one. - Jarred Younger
Could glp-1 agonist drugs really, potentially help with brain inflammation as the recent hype about it suggests? Read a lot of surprisingly positive experiences...
Question: I don’t know where else to ask a question off topic.
If microglia cells are in large part the reason ME/CFS is perpetuated then why are many of the accompanying symptoms not present during a normal cycle of a virus? Myoclonus, non-fulfilling sleep…
Thank you
This is great news & refreshing to hear. My doc will only prescribe stimulants for 5 months of what appears to be CFS. I don’t know if I’m on a lucky streak for 2 weeks feeling good but I did start *oxaloacetate 2 weeks ago. Correlation or causation?
I have a list of more drugs once it returns: viagra, psilocybin, LDN, Mirapex, Rapacymin & Ketamine. Will buy other drugs after this & may try some supplements. I did have a viral thing in April.
Interesting one - this sounds like something Laurel Crosby at Stanford would want to hear about. I think she has some hypotheses focused on citric acid and related cycles. - Jarred Younger
@@youngerlab that’s right the Krebs cycle I think. Should I continue with good results and know, I plan to reach out. Thank you.
May I ask if you can do a video on the Itaconate Shunt hypothesis? I'm curious what other researchers who work on ME view it. It seems so essential to me, but I rarely hear it mentioned, and I wonder if it's because you disagree or are disinterested, or because it's so obvious where it fits with your work, etc?
wondering the same...
I think methylene blue helps somewhat with energy. But I’m still experimenting, three months in.. 20 drops per day…best to you from the Netherlands..
May I ask is that because of all the horrible compounds used to amend the soil and build up in our bodies and leading to the lack of our red blood cells to properly carry oxygen? Greetings by the way back to you in the Netherlands.
Proper testing of intracellular micronutrient and vitamin deficiencies.
My long COVID most certainly came not from getting COVID (I did not get COVID), but from the repeated mRNA vaccines (5 of them). For me, the most helpful treatment did not come from my doctor- he would not even acknowledge that I had a vaccine injury and therefore offered only Gabapentin which made things so much worse. I went online and then decided to pursue a course of Augmented NAC (that I had to order from Europe) coupled with Nattokinase to address the accumulated spike protein and micro-clots that I suspect were the culprits wreaking havoc in my body- causing lots of inflammation, heart palpitations, vascular and muscle spasms, peripheral neuropathy, brain fog and histamine intolerance. After 4 months on these supplements, I was able to see real improvement. I also had to stay on a fairly strict low-histamine diet for almost a year. Finally, because the long COVID was so painful and traumatic, I recently pursued some mind-body approaches to managing the nociceptive pain that developed because this all went on for 2 years and turned my life upside down. Don't discount how valuable the latter was.
Mine was removed too. Is it possible to send you research idea and if so how?. It is very important. But noone will listen...
We need teclistamab asap!
Sure they do.
Research:
Astragalus Root tincture
Butchers Broom tincture
Skullcap tincture
Good suggestions . . .
I admit, none of those were on my radar. Thanks! - Jarred Younger
@@youngerlabthey need to understand mcas at a very deep level and develop new drugs.all this stuff is sticking plasters.
Astralagus, broccoli seed extract, black seed oil, cacaou, .
The list is never ending but they need to find the root because I've tried this stuff over decades and they work for a while.
Beta blockers and Zoloft are great.
Diaezepam very helpful.
Any anti sntinflammatory is good.
Mast cell stabilisers are really good...but again you return to some kind of weird baseline.
It's like we're just dealing with oxidative stress and mcas..but why is this happening
@@youngerlabthank you for your work and collaborative spirit thi
@@youngerlabmilk thistle
Tudca, b vitamin complex, copper ( perhaps) . Hyperbaric oxygen. Ganglion block.
Hi Jarrad , I have ME/CFS and hypermobility . Had it 40 years . Somehow the switch has been switched by getting covid ! I mask up still . Subsequent vaccine also helped . ( first 2 were hard work ) . I sleep now ! Wake refreshed . I can do light exercise at the gym ( prior I couldn’t just drive to the gym ) . I am v careful still esp with good or bad stress and when I feel my body going into any kind of overdrive . The minute my sleep gets altered I pull right back . Gone from a 5 to an 8 and that’s a big leap . The exact same thing happened with appendix surgery . That time the whole illness seeped back in one morning . I’m now concentrating on the pots side of things . Best drug prior to that was propranolol which I continue to take as it helps sleep and no one will give me ivabradine to control heart rate during the day . I will sometimes take 5 mg to quell heart rate in what my body has perceived as stress and the adrenalin goes over board .
Weirdly , I also find nsaids v useful and I don’t think it’s only for pain , but don’t know .
I can't recommend for individuals of course, but I wonder if the clinician has brought up stellate ganglion blocks. - Jarred Younger
Myofascial pain syndrome is the most common chronic pain condition worldwide. Myofascial pain is common in nearly all chronic pain conditions.
Yeah I’m done with anything having to do with the government and their version of “health”. No thanks.
The winning therapies will be those most profitable for pharmaceutical companies. If it makes them billions and has horrid side effects it will become the recommended drug/therapy of choice and the only ones covered by insurance.
I'll be keeping a close eye on what treatments get selected for testing. - Jarred Younger
Great
This is just LC, not ME?
Have you done a video talking about Guanfacine and N-acetylcysteine as treatment for brain fog and cognitive dysfunction in long covid patients? I'm diagnosed with ME/CFS, so anything that could be used to treat the brain fog etc. experienced by long covid patients is very interesting to me.
In my case the keto diet resolved this problem within 3 weeks and it stayed this way even though I switched to the low carb.
@@IZombi-mx9lsnice it helped you. I have had it since 1991 and those diets did nothing in the long run. Our brain in Cf/ME becomes essentially continually stimulated ( the neurons) unnecessarily and when the brain runs out of glucose which the fastest source is sugar, starches it then turns to protein and fat and if forced to just use protein only in those diets it in fact has the potential to put one such as myself comatose.
@@ninner196 sorry to say that, but it seems you have no idea that the brain prefers ketones for fuel and it's limitless energy if you are in ketosis because your liver produces it constantly.
I'd like to see a study of NAC for LC since it could help with the microclots. NAC has been found to reduce the size of von Willebrand factor multimers - which I think has been implicated in LC microclots. NAC has a lot of other interesting activities as well.
@@ninner196 You should watch the interview on the Anthony Chaffe channel: The hard science of your metabolism on keto, carnivore and carbs with Dr Bikman
Dr Younger, I really think the poisoning of the food supply in America is a big factor that isn’t being addressed. How can our bodies adequately heal when the food that we are eating is often saturated with toxic chemicals that are banned in other countries? For example, our grains are sprayed with glyphosate to dry them out for harvesting. Even if a treatment is effective, the ongoing poisoning of our bodies is going to cause problems eventually. I literally feel my best when I don’t eat for a couple days. As a thin person, this is not sustainable but it did make me realize that there’s something seriously wrong with our food. And that’s why it’s even banned in some countries. We have to ban these pesticides and food additives that are banned in Europe for good reason.
My comment got removed?
If it has a link or a bad word they get removed
@@brobinson8614 Apparently also when you simply disagree.
Has hemoglobin from marine worm been tried? It's a much better oxygen carrier than human hemoglobin and much smaller which means it can get anywhere in the body even places where normal blood red cells cannot so any oxygenation deficiency could likely be countered with it.
@@JB-te7cj the mitochondria appear to not be uptaking oxygen & have switched their metabolism
That would make good sense for someone with chronically suppressed blood oxygen levels. I don't know if someone has tried it in long-term symptoms after the acute infection has resolved. - Jarred Younger
God & prayers!!!!❤
Savella
¿Savila? O aloe Vera?
Nicotinic Acid 500mg a day made me feel perfectly normal. Actually, even better than normal. When I tried to stop I would crash.
Interesting. Do you know if you had observably low B3 levels before starting? - Jarred Younger
@@youngerlab I have normal blood levels of everything that is typically checked. High C3a and C4a cause vaso constriction. Nicotinic Acid causes vaso dilation and restores mitochondria function. Typically something is disrupting the mito respiratory chain. Depending on what complex is affected, Niacin could help. Other complexes could be helped by methylene blue. You have to do a mito swab and find out which complexes are begin disrupted to determine which solution.
Is nicotinic acid the same as the nicotine in nicotine patches ?
@@leondevries478hi there. No it's not the same. It's a version of vitamin B3. It can be bought online and is very cheap. There are several forms of B3. Make sure it's nicotinic acid. Can cause drop in blood pressure, and other side effects at high doses. Start with 100mg and work up slowly. Use under Dr supervision
@@shawnshawn7477 Is nicotinic acid present in all products containing nicotine?
Fatty liver is sometimes a large factor for Americans. It at least makes recovery a lot harder.
Wow, some responses 😂. Sorry couldn’t help myself, have to find humor in somethings eh?
Test
Treat chronic and reactive EBV and youll get your answers
Great awareness thanks again ❤️🩹
Ridiculous
Silly. Need treatment for Long lingering Idiocy. "Safe & Effective! Morons!
If you are not able to address the mold issue and probably 99% are not from my experience none of the other things will make a noticable difference.
First and foremost Mold avoidance. IE avoid mold found in water damaged buildings air conditioners, ducting, don't worry about all the other BS like contamination, throwing away all your belongings mycotoxins detoxing, cutting your hair all that other trash. This is of course easier said than done because even brand new houses can and do have these types of issues why I live in a metal building.
Stay away from alcohol, Tobacco, weed, medications, drugs, coffee, sugar, excessive and or unhealthy fats, excessive vitamins, licenced or un-licensed IV jerks who want to put some type of magic potion directly into your veins, perfumes, chemicals, smoke, high levels of pollution.
No wacky unsustainable diets like carnivore or keto.
Calorie restriction, intermittent fasting, eat 2 meals at the same time of day in a 6 hour window, at least 6 hours before bed. Go to bed and get up at the same time every day (as much as possible) pay attention to your circadian rhythm in other words.
Eat small amounts of a wide variety of quality foods in the hopes of reducing sensitivity to any one. IE vegetables, potatoes, rice, beans, meat, fruit, nuts grains exactly what is described in the food pyramid.
Gluten avoidance
Exercise and activity as much as possible. If you think you are going to have insomnia more, if you are crashing from PEM less.
Avoid toxic parasitic people who have no desire to understand you situation and who try to make your condition about your character. Don't let them take up any space in your head.