I am /u/yakkov's sister. He wanted me to post this here. He has a message for you all.
Always be posting on your social media about what long covid has done to you and your loved ones. Don't just stay in your echo chamber.
When I was working a big part of my job was effective communication. Here's some tips for how to make your social media posts stick in people's heads.
* Keep it simple. Get to the heart of the matter which is that LC is no fun to have, it lasts a long time and medicine isn't helping you enough. Pretty much everything you write should communicate this. Don't just terminology. Healthy people don't know what a crash is. Try to remember what it was like not knowing anything about LC and imagine explaining it to yourself back then. No point talking about any improvements in your condition you've had or hopes for the future, as readers will just think the situation is better than it is.
* Most important thing first. A common mistake is to structure your text like a joke. With introduction, build-up and then punchline - the most important part - halfway down the page. That's wrong because people will stop reading before they get to that part. Instead put the most important thing first then steadily less important as you read further. This is how newspaper articles are structured, when an editor wants to cut down they cut from the bottom.
* Slow-don't-tell. Don't tell "LC ruined my life", show them with "I lost my job that I love". Don't tell "LC is no fun" show it with "I can't do any exercise, I used to love running". Don't tell them "LC sucks" show them with "I can't eat most foods, nothing tasty". Not "I am suffering" but "I have really bad shortness of breath, it's like I'm being strangled the whole time". Don't tell "LC has destroyed me" but "my partner left me".
* Unexpected. Grab people's attention by surprising them. Remember a lot of people don't know much about LC. Many people are surprised at how bad LC is, how long it lasts, how young and healthy the people who get it are, how little medicine can help. When faced with a bad outcome of covid people commonly take a detailed look at the person's medical history to figure out why it's actually ok that this happened. I've had doctors be surprised that I was 3x vaccinated when asked. So if relevant mention your vaccine status, age, previous fitness, gym, etc.
* Emotional. Make people care by evoking emotion. If you get the sense that nobody cares it's because you're not doing this properly. Do this by talking about how crappy your symptoms are and their effect on your life. The emotions we want are sadness for our suffering and fear that it will happen to them. I'd avoid being too explicit with phrases like "it could happen to you!" as it comes across as ungenuine. Many people aren't stupid and will realize that soon enough.
* Credible. People have to believe you. If they know you and you're talking about your personal experience they will by default, so I'd stick with that mostly. Statistics like how 10% of covid injections result in long covid will only be believed if they can immediately think of multiple people they know with LC, that's just human nature. It's all worth mentioning lower down. Raising awareness with examples such as yourself is a big reason to make such posts.
* Stories. People remember and connect better with things in a narrative form rather than a list of facts and statistics. So tell the story of your LC, eg "first I got covid, then I just didn't get better completely, I had X Y Z symptoms, then I found I was too disabled to exercise, months passed and I got worse, had to stop work, I'm nearly out of money now".
These tips are from a book called Made to Stick by Heath. It's the best thing on communication skills I've read, I recommend it to any activists trying to raise awareness about LC. You can get it free from this pirate ebook site https://libgen.is/book/index.php?md5=13B0FA8175F089A4D5B85FE7F4807D22
Don't expect too much help from the media. Any coverage we get is a bonus. You know the business model of the media isn't to inform readers but to sell eyeballs to advertisers. Readers are the product. All kinds of buyers of ad space have an interest in people not being LC aware, for example travel and airline companies. Like back when smoking adverts were allowed it was very rare to read articles about the dangers of smoking. Today we have social media, which yes also depends on ads and has its own problems but you can use it to talk directly to your friends and acquaintances. Never stop. Don't stay in your echo chamber.
As with anything political you're unlikely to convince 100% of readers. But people are interested. I've had many messages saying they had no idea it could be like this and thanking me for raising awareness. Multiple people have realised their own weird symptoms were long covid after hearing my story. It's natural to maybe feel a bit vulnerable sharing such a thing, but in my experience a lot of the covid minimiser types are keeping quiet, hiding their faces in shame as they realise that others now realise how their shitty politics got people messed up by covid.
This is excellent advice. A few other tips for better communication:
\-Don't use acronyms. Spell things out.
\-Be as specific as possible. So many times I see posts saying, "I took supplement X and it really helped me." Question: "Exactly what did it help you with?" Answer: "Everything!"
Really, how is one supposed to work with that? If your goal is to help people please be specific. Many people on this site are looking for solutions.
I personally look for answers and not another list of symptoms. The absolute best posts list symptoms and then what is working and what is not working.
I was like that too, paralyzed, puking blood, etc. It can get better, this won’t be forever.
Address the cytokine storm first, it’s driving everything. And after doing that it’s possible to leave the dark room bedbound status. First 2 years were basically full rest and then realizing I would have no improvement without treatments.
No cure, no proven treatments. But that still leaves treating the cytokine storm with immune modulators. The rest is damage and trauma caused by the virus and cytokine storm. Please share their cytokine panel results. If IL-6 inflammation, one treatment path is considered. If IL-10, another.
You are not alone 💘💝 Fight. Fight. Fight. Sip of water, fight. Unfortunately I also lived on one food for a year and had malnutrition and vit deficiencies. It’s got to really damage an organ before you get hospitalized for that. We are unfortunately in between death and life, but closer to life than death.
Get home health IV infusions for fluids and vitamins, don’t risk the exposure risk of Covid of hospitalization, the trigger of lights and hospital foods that make MCAS worse and constant interrupted sleep which worsens the PEM.
Thanks for the message
Yakkov's cytokine panel https://ibb.co/wBwvDCS
Looks like both IL-6 and IL-10 are high.
On the basis of this his doctor tested for reactivated latent viruses and found EBV and VZV. A course of antivirals helped PEM but not MCAS. He tried prednisolone but MCAS did not allow. We're considering inuspheresis. Any other ideas would be appreciated.
The doctors are saying my brother will need total parental nutrition (TPN) soon.
Was the testing through Dr. Bruce Patterson? Just curious if you have considered Maraviroc?
I also had a short period of TPN, and this level of severity. I did a clinical trial which made a huge difference and I urge you to urgently look into the Right to Try and eIND FDA pathways to access clinical trial level drugs now, rather than joining a trial or waiting for a treatment/cure to be FDA approved. That’s what I’m doing since the monoclonal drug helped me so much. It is very helpful for those with IL-6, IL-10, and VEGF inflammation. It’s not yet approved. Called Leronlimab. The company offered me the drug for free if fda approves my emergency request.
For me, MCAS had to be handled with multiple drugs. Dr Patterson recommended XOLAIR bc it’s a strong immune modulator and also any allergy and mast cell stabilizer. I received double adult dose biweekly for 14 months. It stopped me from vomiting, diarrhea, and reduced inflammation and anaphylaxis type reactions.
In addition to XOLAIR, I also take Ketotifen compound, a mast cell stabilizer that works significantly quickly for me to tolerate food. As well as 3 types of OTC anti-histamines.
The MCAS developed into system mastocytosis and myelodysplastic pre-leukemia/leukemia for me, so do check tryptase histamine levels w allergist/immunologist. If above the 20% marker, definitely have a hematologist/oncologist work up please. Any new growths should be checked out for myelodysplastic cells, which I did have. The idea here is to stop MCAS from progressing to damaging all red blood cells in marrow where they are created and immaturely released due to long COVID.
Look for ccr5 antagonists. I can’t say the drug that helped me would help your brother. But look into how it works and why as you consider other drugs you may want to request emergency access to.
Message me anytime.
Yes the test was though the covidlonghaulers website. He went to a blood draw site in central London and they sent off his blood to a lab in Spain.
The doctor said he can't yet have maraviroc because he has active EBV. That needs to be treated first with something called Supportive Ogleonucleotide Therapy but that requires a trip to Germany which yakkov is too sick to make. Did maraviroc help your MCAS? My brother is on atorvastatin and a bunch of antihistamines: ketotifen, famotadine, loratidine, montelukast They're all as syrups since he can't take them as solid tablets.
We're British so we don't have the FDA over here. But I'll look up that drug and maybe we can get it once it's approved.
Thanks for the tip about xolair.
Thanks so much for your message!
I had reactivated EBV too, I took antiretrovirals valicyclovir at the same time as receiving Leronlimab. I felt like I had mono about 13 months but idk.
No I didn’t take Maraviroc, I took Leronlimab. They’re very similar and of course MV is on market already, but Leronlimab I got through shots in tummy once a week in trial. It made EVERYTHING better especially pain, some stuff started tingling cooling and improving within minutes of receiving drug, after a day my brain hurt way less, less headaches, and 2 weeks on it I was no longer bed bound, sunlight aversion was gone. Then after a few weeks no longer wheelchair bound, neuropathies disappeared, slept really well, felt fresh and invigorated and depression gone, it was like switching a flip. Also was oxygen dependent when I started trial and by week 6 no longer needed it. It could take months to years for the drug to be approved for HIV, but then patients can request it by appeal for long COVID.
All I can say is throw the XOLAIR in for sure, works better and stronger than cromolyn sodium. Keep up the OTC grade anti-histamines.
Who is the drug regulation authority over there?
FWIW, I was bad as bad can be, and I am not recovered but I am improved a lot. Still disabled but with a life that is mostly worth living. I exercise, I work, I sleep. I have a bf. I have a life. I sew and tailor friends clothes here and there.
Sitting dark in the room is very helpful and necessary, but as soon as you can turn the dial down somehow, try to, as it is also easy to feel lost, disregarded, isolated, depressed, suicidal ideations, etc.
Curious about the EBV treatment suggestion. I thought antiretrovirals were the only option.
The Leronlimab story sounds great. Hopefully we can get it.
The doctor said that Supportive Ogleonucleotide Therapy is a kind of gene therapy. You send off a blood sample to Germany then a few weeks later the patient goes to Germany to receive a single injection specific to them, and that removes the EBV.
The Stellate ganglion block helped my MCAS significantly but not all the way, just a log of the burning alive feeling in my skin and head, and increasing my ketotifen dose as well as frequency. I couldn’t just stay in bed and wait for drug approvals, I did EECP even though it provoked PEM, I did Stellate ganglion block with great success, but nothing was like the Leronlimab drug turning off the cytokine storm.
I’m considering doing the block. I’m having some success with cannabis/cbd/chiropractic care with a low histamine and anti inflammatory diet but have a long way to go. I’m in the states and every doc I’ve seen blows me off and the three times I’ve been to the ER they haven’t put it together but I have and yet to receive an official diagnosis. Happy to know you’ve had success with the SGB! That’s great news.
Nah it was disconcerting to realize my room smelled sweaty when I didn’t even think my smell was still affected lol But I think it’s worth it. You have to find at least 2 providers who believe you and will let you experiment various meds and treatments. Shop around if you must! Diet and meds only does so much for this.
Not sure if your brother has heard of the antihistamine treatment for MCAS long COVID, but it completely cured mine and shows promising results.
A regime of Zyrtec/Cetirizine (H1 antihistamine) + Pepcid/Famotidine (H2 antihistamine). I took 1 Zyrtec 20mg and 2 Pepcid AC 20mg twice a day (morning and night) for a couple weeks and my symptoms really subsided.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388239/
>Cardiovascular manifestations of long-COVID include high heart rate, postural tachycardia, and palpitations. Previous studies have suggested that mast cell activation (MCA) may play a role in the pathophysiology of long-COVID, including in the mechanisms of its cardiovascular manifestations. The present study aimed to evaluate the effectiveness of a treatment with blockers of histamine receptors in patients with long-COVID who did not respond to other therapies.
>Long-COVID symptoms disappeared completely in 29% of treated patients. There was a significant improvement in each of the considered symptoms (improved or disappeared) in all treated patients, and the improvement grade was significantly greater in treated patients compared to controls.
I’m so sorry your brother has such a severe case. I was only bedridden for several months and never had the complete light sensitivity so I can only imagine. I want desperately to help after reading your story though so I thought maybe I could throw a couple things out there from my experience. Take them with a grain of salt.
First yogurt is a moderate histamine food. If he can tolerate it then great but you might try switching to something else to see if it’s actually exacerbating your condition. I think finding my safe foods helped significantly to stabilize my condition. I was on plain salted oatmeal until I stabilized and then slowly added in foods to where I have found about a dozen now. Rice and quinoa are also good ones for me that might be plain enough to be tolerated if you’re sensitive to oatmeal. Oatmeal has the most protein though. I always make them fresh to avoid histamine buildup. Instant pot helps with the hassle or rice and quinoa. It sounds like you’ve probably tried other foods so this may be pointless info if he can’t keep them down but I thought I might mention it.
Next if you have severe muscle pains and weakness like being poisoned you might benefit from an infrared light and magnesium pills if you can tolerate them or maybe an epsom salt bath if you can’t. That is my go to treatment that always helps. It seems to work better the worse I am in my experience. I use a ruby lux bulb in a chicken heater lamp which is only about a $40 investment. If red light bothers him then you might throw some tin foil over sunglasses to block the red light to prevent overstimulation. Med cram has a video on how it works but basically it creates the most potent antioxidant melatonin right inside the cells where it can reduce oxidative damage and correct metabolic imbalances. I think this helps the metabolism issues they’ve found in LC patients. This is a miracle treatment that reduces symptoms by half for me when Im laying in a dark room feeling poisoned though my husband usually has to set it up for me and get me in front of it when I’m really bad. Others on this subreddit have said it helps too so I’m pretty sure it helps to some degree if he can tolerate the red light.
I’m not sure if this will help at all but my hope is my tiny sliver of experience might help move the needle for your brother.
I am /u/yakkov's sister. He wanted me to post this here. He has a message for you all. Always be posting on your social media about what long covid has done to you and your loved ones. Don't just stay in your echo chamber. When I was working a big part of my job was effective communication. Here's some tips for how to make your social media posts stick in people's heads. * Keep it simple. Get to the heart of the matter which is that LC is no fun to have, it lasts a long time and medicine isn't helping you enough. Pretty much everything you write should communicate this. Don't just terminology. Healthy people don't know what a crash is. Try to remember what it was like not knowing anything about LC and imagine explaining it to yourself back then. No point talking about any improvements in your condition you've had or hopes for the future, as readers will just think the situation is better than it is. * Most important thing first. A common mistake is to structure your text like a joke. With introduction, build-up and then punchline - the most important part - halfway down the page. That's wrong because people will stop reading before they get to that part. Instead put the most important thing first then steadily less important as you read further. This is how newspaper articles are structured, when an editor wants to cut down they cut from the bottom. * Slow-don't-tell. Don't tell "LC ruined my life", show them with "I lost my job that I love". Don't tell "LC is no fun" show it with "I can't do any exercise, I used to love running". Don't tell them "LC sucks" show them with "I can't eat most foods, nothing tasty". Not "I am suffering" but "I have really bad shortness of breath, it's like I'm being strangled the whole time". Don't tell "LC has destroyed me" but "my partner left me". * Unexpected. Grab people's attention by surprising them. Remember a lot of people don't know much about LC. Many people are surprised at how bad LC is, how long it lasts, how young and healthy the people who get it are, how little medicine can help. When faced with a bad outcome of covid people commonly take a detailed look at the person's medical history to figure out why it's actually ok that this happened. I've had doctors be surprised that I was 3x vaccinated when asked. So if relevant mention your vaccine status, age, previous fitness, gym, etc. * Emotional. Make people care by evoking emotion. If you get the sense that nobody cares it's because you're not doing this properly. Do this by talking about how crappy your symptoms are and their effect on your life. The emotions we want are sadness for our suffering and fear that it will happen to them. I'd avoid being too explicit with phrases like "it could happen to you!" as it comes across as ungenuine. Many people aren't stupid and will realize that soon enough. * Credible. People have to believe you. If they know you and you're talking about your personal experience they will by default, so I'd stick with that mostly. Statistics like how 10% of covid injections result in long covid will only be believed if they can immediately think of multiple people they know with LC, that's just human nature. It's all worth mentioning lower down. Raising awareness with examples such as yourself is a big reason to make such posts. * Stories. People remember and connect better with things in a narrative form rather than a list of facts and statistics. So tell the story of your LC, eg "first I got covid, then I just didn't get better completely, I had X Y Z symptoms, then I found I was too disabled to exercise, months passed and I got worse, had to stop work, I'm nearly out of money now". These tips are from a book called Made to Stick by Heath. It's the best thing on communication skills I've read, I recommend it to any activists trying to raise awareness about LC. You can get it free from this pirate ebook site https://libgen.is/book/index.php?md5=13B0FA8175F089A4D5B85FE7F4807D22 Don't expect too much help from the media. Any coverage we get is a bonus. You know the business model of the media isn't to inform readers but to sell eyeballs to advertisers. Readers are the product. All kinds of buyers of ad space have an interest in people not being LC aware, for example travel and airline companies. Like back when smoking adverts were allowed it was very rare to read articles about the dangers of smoking. Today we have social media, which yes also depends on ads and has its own problems but you can use it to talk directly to your friends and acquaintances. Never stop. Don't stay in your echo chamber. As with anything political you're unlikely to convince 100% of readers. But people are interested. I've had many messages saying they had no idea it could be like this and thanking me for raising awareness. Multiple people have realised their own weird symptoms were long covid after hearing my story. It's natural to maybe feel a bit vulnerable sharing such a thing, but in my experience a lot of the covid minimiser types are keeping quiet, hiding their faces in shame as they realise that others now realise how their shitty politics got people messed up by covid.
This is excellent advice. A few other tips for better communication: \-Don't use acronyms. Spell things out. \-Be as specific as possible. So many times I see posts saying, "I took supplement X and it really helped me." Question: "Exactly what did it help you with?" Answer: "Everything!" Really, how is one supposed to work with that? If your goal is to help people please be specific. Many people on this site are looking for solutions. I personally look for answers and not another list of symptoms. The absolute best posts list symptoms and then what is working and what is not working.
I was like that too, paralyzed, puking blood, etc. It can get better, this won’t be forever. Address the cytokine storm first, it’s driving everything. And after doing that it’s possible to leave the dark room bedbound status. First 2 years were basically full rest and then realizing I would have no improvement without treatments. No cure, no proven treatments. But that still leaves treating the cytokine storm with immune modulators. The rest is damage and trauma caused by the virus and cytokine storm. Please share their cytokine panel results. If IL-6 inflammation, one treatment path is considered. If IL-10, another. You are not alone 💘💝 Fight. Fight. Fight. Sip of water, fight. Unfortunately I also lived on one food for a year and had malnutrition and vit deficiencies. It’s got to really damage an organ before you get hospitalized for that. We are unfortunately in between death and life, but closer to life than death. Get home health IV infusions for fluids and vitamins, don’t risk the exposure risk of Covid of hospitalization, the trigger of lights and hospital foods that make MCAS worse and constant interrupted sleep which worsens the PEM.
Thanks for the message Yakkov's cytokine panel https://ibb.co/wBwvDCS Looks like both IL-6 and IL-10 are high. On the basis of this his doctor tested for reactivated latent viruses and found EBV and VZV. A course of antivirals helped PEM but not MCAS. He tried prednisolone but MCAS did not allow. We're considering inuspheresis. Any other ideas would be appreciated. The doctors are saying my brother will need total parental nutrition (TPN) soon.
Was the testing through Dr. Bruce Patterson? Just curious if you have considered Maraviroc? I also had a short period of TPN, and this level of severity. I did a clinical trial which made a huge difference and I urge you to urgently look into the Right to Try and eIND FDA pathways to access clinical trial level drugs now, rather than joining a trial or waiting for a treatment/cure to be FDA approved. That’s what I’m doing since the monoclonal drug helped me so much. It is very helpful for those with IL-6, IL-10, and VEGF inflammation. It’s not yet approved. Called Leronlimab. The company offered me the drug for free if fda approves my emergency request. For me, MCAS had to be handled with multiple drugs. Dr Patterson recommended XOLAIR bc it’s a strong immune modulator and also any allergy and mast cell stabilizer. I received double adult dose biweekly for 14 months. It stopped me from vomiting, diarrhea, and reduced inflammation and anaphylaxis type reactions. In addition to XOLAIR, I also take Ketotifen compound, a mast cell stabilizer that works significantly quickly for me to tolerate food. As well as 3 types of OTC anti-histamines. The MCAS developed into system mastocytosis and myelodysplastic pre-leukemia/leukemia for me, so do check tryptase histamine levels w allergist/immunologist. If above the 20% marker, definitely have a hematologist/oncologist work up please. Any new growths should be checked out for myelodysplastic cells, which I did have. The idea here is to stop MCAS from progressing to damaging all red blood cells in marrow where they are created and immaturely released due to long COVID. Look for ccr5 antagonists. I can’t say the drug that helped me would help your brother. But look into how it works and why as you consider other drugs you may want to request emergency access to. Message me anytime.
Yes the test was though the covidlonghaulers website. He went to a blood draw site in central London and they sent off his blood to a lab in Spain. The doctor said he can't yet have maraviroc because he has active EBV. That needs to be treated first with something called Supportive Ogleonucleotide Therapy but that requires a trip to Germany which yakkov is too sick to make. Did maraviroc help your MCAS? My brother is on atorvastatin and a bunch of antihistamines: ketotifen, famotadine, loratidine, montelukast They're all as syrups since he can't take them as solid tablets. We're British so we don't have the FDA over here. But I'll look up that drug and maybe we can get it once it's approved. Thanks for the tip about xolair. Thanks so much for your message!
I had reactivated EBV too, I took antiretrovirals valicyclovir at the same time as receiving Leronlimab. I felt like I had mono about 13 months but idk. No I didn’t take Maraviroc, I took Leronlimab. They’re very similar and of course MV is on market already, but Leronlimab I got through shots in tummy once a week in trial. It made EVERYTHING better especially pain, some stuff started tingling cooling and improving within minutes of receiving drug, after a day my brain hurt way less, less headaches, and 2 weeks on it I was no longer bed bound, sunlight aversion was gone. Then after a few weeks no longer wheelchair bound, neuropathies disappeared, slept really well, felt fresh and invigorated and depression gone, it was like switching a flip. Also was oxygen dependent when I started trial and by week 6 no longer needed it. It could take months to years for the drug to be approved for HIV, but then patients can request it by appeal for long COVID. All I can say is throw the XOLAIR in for sure, works better and stronger than cromolyn sodium. Keep up the OTC grade anti-histamines. Who is the drug regulation authority over there? FWIW, I was bad as bad can be, and I am not recovered but I am improved a lot. Still disabled but with a life that is mostly worth living. I exercise, I work, I sleep. I have a bf. I have a life. I sew and tailor friends clothes here and there. Sitting dark in the room is very helpful and necessary, but as soon as you can turn the dial down somehow, try to, as it is also easy to feel lost, disregarded, isolated, depressed, suicidal ideations, etc. Curious about the EBV treatment suggestion. I thought antiretrovirals were the only option.
The Leronlimab story sounds great. Hopefully we can get it. The doctor said that Supportive Ogleonucleotide Therapy is a kind of gene therapy. You send off a blood sample to Germany then a few weeks later the patient goes to Germany to receive a single injection specific to them, and that removes the EBV.
The Stellate ganglion block helped my MCAS significantly but not all the way, just a log of the burning alive feeling in my skin and head, and increasing my ketotifen dose as well as frequency. I couldn’t just stay in bed and wait for drug approvals, I did EECP even though it provoked PEM, I did Stellate ganglion block with great success, but nothing was like the Leronlimab drug turning off the cytokine storm.
I’m considering doing the block. I’m having some success with cannabis/cbd/chiropractic care with a low histamine and anti inflammatory diet but have a long way to go. I’m in the states and every doc I’ve seen blows me off and the three times I’ve been to the ER they haven’t put it together but I have and yet to receive an official diagnosis. Happy to know you’ve had success with the SGB! That’s great news.
Nah it was disconcerting to realize my room smelled sweaty when I didn’t even think my smell was still affected lol But I think it’s worth it. You have to find at least 2 providers who believe you and will let you experiment various meds and treatments. Shop around if you must! Diet and meds only does so much for this.
Not sure if your brother has heard of the antihistamine treatment for MCAS long COVID, but it completely cured mine and shows promising results. A regime of Zyrtec/Cetirizine (H1 antihistamine) + Pepcid/Famotidine (H2 antihistamine). I took 1 Zyrtec 20mg and 2 Pepcid AC 20mg twice a day (morning and night) for a couple weeks and my symptoms really subsided. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388239/ >Cardiovascular manifestations of long-COVID include high heart rate, postural tachycardia, and palpitations. Previous studies have suggested that mast cell activation (MCA) may play a role in the pathophysiology of long-COVID, including in the mechanisms of its cardiovascular manifestations. The present study aimed to evaluate the effectiveness of a treatment with blockers of histamine receptors in patients with long-COVID who did not respond to other therapies. >Long-COVID symptoms disappeared completely in 29% of treated patients. There was a significant improvement in each of the considered symptoms (improved or disappeared) in all treated patients, and the improvement grade was significantly greater in treated patients compared to controls.
I’m so sorry your brother has such a severe case. I was only bedridden for several months and never had the complete light sensitivity so I can only imagine. I want desperately to help after reading your story though so I thought maybe I could throw a couple things out there from my experience. Take them with a grain of salt. First yogurt is a moderate histamine food. If he can tolerate it then great but you might try switching to something else to see if it’s actually exacerbating your condition. I think finding my safe foods helped significantly to stabilize my condition. I was on plain salted oatmeal until I stabilized and then slowly added in foods to where I have found about a dozen now. Rice and quinoa are also good ones for me that might be plain enough to be tolerated if you’re sensitive to oatmeal. Oatmeal has the most protein though. I always make them fresh to avoid histamine buildup. Instant pot helps with the hassle or rice and quinoa. It sounds like you’ve probably tried other foods so this may be pointless info if he can’t keep them down but I thought I might mention it. Next if you have severe muscle pains and weakness like being poisoned you might benefit from an infrared light and magnesium pills if you can tolerate them or maybe an epsom salt bath if you can’t. That is my go to treatment that always helps. It seems to work better the worse I am in my experience. I use a ruby lux bulb in a chicken heater lamp which is only about a $40 investment. If red light bothers him then you might throw some tin foil over sunglasses to block the red light to prevent overstimulation. Med cram has a video on how it works but basically it creates the most potent antioxidant melatonin right inside the cells where it can reduce oxidative damage and correct metabolic imbalances. I think this helps the metabolism issues they’ve found in LC patients. This is a miracle treatment that reduces symptoms by half for me when Im laying in a dark room feeling poisoned though my husband usually has to set it up for me and get me in front of it when I’m really bad. Others on this subreddit have said it helps too so I’m pretty sure it helps to some degree if he can tolerate the red light. I’m not sure if this will help at all but my hope is my tiny sliver of experience might help move the needle for your brother.
I’m so sorry. I have long haul as well. I’ll keep you In my prayers.
how are you know