A while ago I stopped taking one of my most vital medications — Valcyte, part of a long antiviral medication list that I have tried over the years. But Valcyte actually works for me, and I was not smart to stop taking it. (I’ll get to that part in a minute.)
I’ve spent the last several weeks in a really dark place — literally a dark room with covers on the inside and outside of the windows. If you regularly read this blog then you may be wondering how that is different from the way my life has consistently been over the last several months. So let me say: The difference is big. I’ve become so sensitive to light that I’m back to wearing tanning goggles (can’t find my pink ones) and washcloths to shield my eyes from even subtle amounts of light. But lately light hasn’t been the only issue I’ve faced.
I need someone, usually my mom, to brush my teeth for me and do so many other things like opening pill bottles to take my medications or putting on deodorant or swabbing my IV with isopropyl alcohol. I’ve grown accustomed to doing these things for myself as my recovery has progressed since 2015 when I was at my sickest. For me the difference between brushing my teeth and having to have someone do it for me is hard to equate to the struggles of healthy people, but it’s sort of like when a middle-aged adult loses their job and has to move in with family and rely on them for food and other necessities.
It’s a total loss of autonomy. So much so I find myself analyzing the scarce enjoyment I find each day — the feel of running water cascading over my face, new flavors in my mouth, a brief glimpse outside at dusk. Even still, it feels as if all I do is eat, sleep, bathe, and stare at the art on my walls. Probably because most days that is in fact all I do. Sometimes if I’ve been looking at the wall too long, then shift my focus to a bare wall, my vision will actually project the outline of the frames onto the blank canvas. It’s a trip, like one of those optical illusion books from middle school.
But the most astonishing part of my diminished quality of life is that I feel I should be grateful for what I still have. I feel like I should be thankful for every moment that I’m not too miserable to concentrate on my own thoughts. And I am! I’m incredibly grateful, but that mindfulness is hard to sustain when things don’t get better. I’ve been sicker in previous years, my quality of life worse, but the little joys I still cling to are hardly a consolation for the parts of my life that have been stolen from me.
I will say, however, that writing this post is a joy for me. And if you’re wondering how I’m able to type these words but can’t brush my teeth, well, it’s hard to explain … It has taken me at least a month to write this post (you may have noticed my absence online). Some days I have only been able to craft a few words. But, regardless of the difficulty and patience it has taken to write this post, I am so grateful to still be able to express myself.
Looking For Comfort
This latest relapse feels like I’m descending back down into a dark yet familiar mine shaft and I’ve lost all sense of direction. I don’t know which way is forward, maybe I’m too far down to tell. This feeling has brought me back to a memory I have from when I couldn’t communicate at all. In mid-2015 my caregiver found an Internet article about Whitney Dafoe, who, like me, is among the sickest patients with MECFS. The article quoted his description of what happens when his health takes a dive. As my caregiver read the article to me, my eyes covered by a thick blanket to block out the light from her iPad, I found a rare bit of comfort knowing that there was someone out there going through something similarly traumatic.
It is this ongoing trauma that is the hardest part of chronic illness for me. How can one heal and move on in life if the fight is perpetual? Multiple doctors have asked about the trauma I experienced before getting sick–a fatal car accident among other things — but nothing I endured prior to getting sick even remotely compares to the trauma I’ve experienced through illness. Not being able to ask for help going to “the bathroom” is among the most traumatic things I’ve experienced; needing that kind of help at all is traumatic enough. Not being able to tell someone you love them, despite your best efforts, is traumatic as well, albeit in a less essential way.
Through talking to so many of my fellow patients, I’ve come to realize that there are two things we are all searching for: comfort and answers to our poor health. Mostly, we just want to know that our circumstances are not unprecedented.
So naturally, during this latest crash of mine, I’ve been looking for comfort and answers. I’ve been wondering: What caused this relapse? How can I prevent it from happening in the future? And, of course, is there anyone out there who has experienced something similar?
You may have noticed from my previous blog post that back in June I got out of bed for the first time in nine months. That was only last month and it has taken me several weeks to write this so, really, the crash started almost immediately after that milestone. Or at least that’s when I started to notice the decline in my condition. As subtle as it was at first, to go from getting out of bed on my own to not being able to brush my teeth in a matter of only a couple weeks has been an abrupt shift. It has taken a lot of adaptation, mostly on the part of my caregivers who now have to help me much more than they used to.
Meanwhile, I’m frustrated and angry that there is continuous harm going on inside my body, I can feel it progress and regress and repeat, and I have no idea what is causing it. It’s surreal to feel such havoc inside my body and not know its origins; is it viral? Metabolic? Genetic? Something else? It’s like finding a pile of shit on your front porch and not knowing who or what left it there.
Nonetheless I’ve been combing the recesses of my mind for potential causes of my poor health. And after lots of thought, I may have figured out the source of my relapse, which, if true, could explain a lot of the ups and downs I’ve had over the last year.
Valcyte And My Antiviral Medication List
In August 2017 my health gradually started to decline after a long upswing in my recovery. During this upswing I was on two main medications — Valcyte (part of antiviral medication list that treats my viruses like cytomegalovirus) and hydrocortisone to correct my adrenal dysfunction. Around the time I started to decline, I had stopped taking both of these medications because, well, I hate them. These are synthetic, toxic pills that have been going into my body every day for the last few years and, however naively, I thought I didn’t need them anymore. Perhaps that’s why it took six weeks of feeling terrible for me to decide to go back on them. But, looking back, it seems the damage had already been done. From August to December of 2017 I went from going outside in my wheelchair every day and speaking at a nearly normal volume to being completely bedridden and unable to speak at all.
My Antiviral Medication List (drugs that I’ve tried):
- Valcyte (only one I’m still taking)
- Famciclovir
- Acyclovir
- Valacyclovir
With the Valcyte and hydrocortisone medications back in my system I slowly started to improve again, or at least stabilize. By April 2018 I was back to sitting on the edge of my bed a few times a day and, as I mentioned earlier, in June I got out of bed for the first time since that crash in late-2017.
But because I’m stubborn and sometimes just oblivious to the possibility of history repeating itself, I made almost the exact same mistake. I was regularly getting out of bed, feeling stable again, so what did I do? Stopped taking the meds, because I hate them, of course. They give me insomnia, make me constipated (TMI?), and put on weight even though I eat fewer than 1,800 calories a day. My skin is always greasy and, oh yeah, the meds make my tongue “hairy.” Basically they’re just about the most fun one can have while swallowing little toxic nuggets twice a day. But apparently, they also keep my health somewhat stable and improve my quality of life. So … I guess I need them.
Though I should say, particularly in regards to Valcyte, that top MECFS researchers have scattered opinions on the idea of viruses being present in the disease. Some believe it’s a major issue while others strongly believe that there is no viral component to the disease. The latter makes no sense to me since countless patients, including myself, have tested positive for active forms of Epstein Barr, cytomegalovirus, and several other viruses. But perhaps part of the confusion is because there may be different subsets of the disease and still no standard diagnostic test to ensure the people with MECFS who are being studied actually have the illness.
It seems likely, in my unscientific opinion, that the active presence of viruses in the body could be a major factor in MECFS. Antiviral medications like Valcyte and the others on the antiviral medication list work by preventing viruses from replicating. This is why it’s important to keep a constant dose of the medication in the body and could explain why my condition deteriorated after only a couple weeks without the drug — the virus had a chance to replicate and take over my body once again.
Still, this theory of mine is just that — an educated guess, a hunch based on previous patterns of how I felt in relation to my consumption of Valcyte. In other words, I don’t want to send anybody on a wild goose chase to try what I not-so-concretely believe helps my health stay afloat. But I know how it goes: We’re all human guinea pigs for each other, so I do encourage those with similar conditions to use my experiences as research.
Just know that I have no definitive proof of which medication is the most essential to me. But if it turns out that Valcyte is indeed fueling my recovery, I will be interested to see to what extent. Is there a cap to how much I can recover thanks to Valcyte? I imagine so, as MECFS has to be much more complex than just the active viruses in my body.
Nonetheless, as I continue to fight a seesaw battle for health and my gut tells me that Valcyte is the most crucial medication that I’m currently taking and for a few reasons:
- It takes time to kick in, which may explain why it has taken me so long to recover now that I’m back on it.
- When I relapse I always feel like a virus has jumped into action inside my body.
- Every time I’ve stopped taking Valcyte my progress has dissolved.
Now keep in mind that along with Valcyte I concurrently take hydrocortisone and receive saline infusions. I’ve also taken other antiviral medications in the past, like Famciclovir, Acyclovir, and Valacyclovir (most of which fall under the “antiviral medication shingles” and “antiviral medication herpes” treatment categories).
But of that antiviral medication list, Valcyte has worked the best for me, but perhaps I need a cocktail of Valcyte and hydrocortisone to keep my health stable. Only time will tell and, unfortunately, it may be several months before I can fully confirm that going back on Valcyte has brought me up to my baseline. Even then I’m sure time and my stubbornness will erode my confidence in the medication, leaving me second guessing my judgment once again. But one thing I promise: If I get back to my baseline in the next year, I will not stop taking Valcyte, no matter how much I hate it.
BEFORE YOU GO…
1. Thanks for reading about Valcyte and my antiviral medication list.
2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would LOVE to see you rocking some Show ME the Money apparel.
3. If you would like to donate to support this blog I would be equally grateful!
Love your writing, Jamison! I had noticed your absence on Twitter and it’s great to get an update from you. I hope this relapse is relatively temporary. Hang in there <3
Sorry you’ve been having such a tough time! I hope the relapse is short-lived and you can get back to recovering, although I also know that people wishing you a speedy recovery is a lot of annoying pressure to do something out of your power.
Hi Jamison,
When I read your stories I consider my situation much less serious and that I am much more fortunate. It’s kind of relative in the sense that misery is misery no matter at what level. Though I really am better off. For one thing I don’t have a problem with light. I’m much more sensitive to people. I don’t know why but when I see people I feel completely drained afterwards. My anniversary is next month. It will be four years. Now most friends and family have fallen away. The friends and family I have contact with are almost always over the phone. This can be problematic as well as I end up having very long phone calls with about 7 people every week. This to can empty what little energy I have available.
I noticed lately that some things have changed with my small family ( 2 sisters and an absent brother) and friends, the ones I still talk to. I realized that my story is now an old story to everyone. Curiously each day for me is like a whole new day of misery. When I get a call people will ask how I’m doing. I’m generally honest and most often I will say “not very well”. Before I finish completing my sentence they will say “me too” and then go on to tell me there troubles. It’s kind of humorous in a way. I don’t mind. I’m tired of my story as well.
I had a flare up about 3 weeks ago and it is finally beginning to let up. I have what some people call Fibromyalgia, along with CFS/ME and about 20 other conditions. By the way I have not been diagnosed with that term by my doctor. He was willing to give me Tramadol after much persuasion on my part. It has worked well for my pain until recently. The effects are beginning to wear off. The drug is losing its potency. I saw my doctor about two weeks ago and asked if he could increase my dosage. He said no and gave me a feeble explanation – I thought. He said I can’t help you and sent me on my way. Curious that he can’t even help me with a little advice or even a kind word.
The pain is pure torture and my therapist suggested we try to use mind over matter techniques, like hypnotism. I’m skeptical but will give it a try. I stopped using words like prayer, hope and wish and similar words. When people use them with me I know they mean well but again I am a complete skeptic. No amount of praying, hoping and wishing is going to help. I believe in science and I am very impressed with Ron Davis from Stanford. I hope you are aware of him. His son’s condition is even worse than yours if that’s possible. Ron just received a sizable grant from the NIH I believe and has a good team of researchers working on this issue. I believe he will be the person to find an answer if there is one.
Finally I just wanted to tell you about a condition I have that sometimes seems worse that all the others. Malaise. I have used that word often to describe my condition but in fact I have never looked it up in the dictionary until a couple of weeks ago. I was floored. It really is a great word which perfectly describes how I feel all the time, or, most of the time.
I always appreciate your blog.
Pat ( Mickey)
I am so sorry you have to choose between the devil and the pills – and having to take meds with bad side effects long term is a horrible choice. There ought to be versions of drugs that have the same usefulness, but no side effects, but I bet there is no money for that research. For many, the side effects mean not taking those meds, but you haven’t been offered a better choice.
But you do have to hang in here until they fix us, until someone discovers what’s going on (and I don’t just mean the ‘flavor of the day’ announcement of a new theory that is THE answer) and figures out what to do. I’m glad at least the meds, when they kick in, give you the benefits.
I think you probably can’t afford the crashes, hard as that may be to accept. I fear for you when I read a post like this one, and hear how far down the hole you went.
I noticed your absence, but after reading about you getting out of bed and going outside last time you posted, I thought you were “out and about”. So I was sorry to read that it wasn’t the case.
I hope that things will get better once you restart your medication.
It’s terrible how medication can be so terrible for us, yet help us with other things… Hopefully one day, there will be medication with no side effects.
There is another really good alternative to synthetic hydrocortisone (HC)!!! I’ve been using it for about 10 years. It’s ‘natural’ cortisone, grown on yams (sometimes soy) and it’s only available through a compounding pharmacist that is a member of the Professional Compounding Association. It’s the same process they use to grow hormones on yam or soy for women.
It works BETTER for me than any synthetic HC I tried, less side effects all the way around and the beauty is that if you’re on a physiologic dose, once you get the dosage down of how much and when to take it through the day, it’s a huge improvement. It honestly makes the difference for me to be completely bedridden and like you….blocking out light and sound….or being at least ambulatory and able to do things, like bathe myself, fix food and more.
If indeed, your adrenals are not working and you can’t tolerate the synthetic HC, or moreover, if the synthetic simply isn’t replicating what you need in the body, which is the case for me, perhaps it’s at least a partial answer.
It costs a pharmacy about $25K to join the organization, so not all of the compounding pharmacists are members, so you have to call around. And from what I’ve learned it’s the only way to get this natural cortisone. My pharmacist in Sugar Land, Texas at Metscript is awesome and has given me all the inside info. It’s the ONLY HC I can tolerate.
So, here is how I get the best deal and use of it. My Endocrinologist prescribes 25 mg capsules (HC 25 mg. – SR) 1 per day. Typically, the pharmacist doesn’t want to give you more than that in one capsule, because they feel any more than that isn’t a ‘physiologic’ dose. But 25 mg. is about a full days dose for me. The pharmacists puts in in SR (sustained released) hypromelos powder which makes it timed release. For some reason, it really helps in that it cuts down on the overstimulation to my heart and CNS (Central Nervous System) of trying to take too much HC at one time.
The capsules cost me about $1.25 apiece. Then I carefully take the lid off the capsule and divide it into doses since 25 mg. at one time is to much for me, even in SR. Obviously, you’d have to have someone do it for you, but it’s a BIG cost savings because they charge you for the capsule and it’s contents no matter how much is in it. I use about 1/3 of the powder in the morning, 1/3 at lunch and 1/3 at dinner. I can take it with food, but it seems to work better if I take it just before meals.
Since I have full blown Addison’s and severe ME/CFS and POTS I really have to stay on top of my dosage during the day. So, I take my temperature about 4 times a day and if I feel a really bad crash coming on. If my temp falls below 97.9 or really low in a crash, sometimes 96.5, thereabouts, I KNOW I have to dose some more. In the SR it can take sometimes an hour for my temp to come back up, but it’s a great tool to monitor it.
Wow…what a well written and enlightening story. Unfortunately, I can relate to the relapse mystery…wondering what causes them and wondering how to avoid them. My health has also fluctuated over the years but I’m currently bedbound/housebound again. The lack of understanding the reason is what pisses me off the most. I just want to know WHY. If I just knew why I was sick or why I am so bad, then maybe it would but just a little bit easier to cope.
Just wanted to let you know that it was nice reading this blog I know that you must have put so much of your little bit of energy into it.
As for Valcyte, that is good to hear. My onset was gradual and didn’t start with an infection so I’ve always pushed antivirals away, especially being sooo chemically sensitive.
However, Dr Montoya did mention that antivirals were not just about the viruses but also about resetting the immune system in some way. Although I don’t understand it, it was an interesting concept and I pretty much gave in to being willing to try it. However, insurance wouldn’t cover it so I never really had the chance. Maybe someday.
Anyhow, keep pushing along my friend. Where there are valleys there are hills…hoping we reach the next peak again soon.
Best,
Monica
Love your emails. I relate to your relapses when your energy is sooo low you lay there in bed drifting in and out of consciousness as your heart struggles. In March I tried 4 x 500mg tabs /day X 2 days of Valacyclovir. It helped along with other things bring me out of relapse. But it also helped with my frequent 3 day trigeminal neuralgia episodes. It stopped it in its tracks in a day and made subsequent episodes 1/2 as painful. My last episode started at a 10 so I tried the valacyclovir, again it stopped it in a day, and helps with ME symptoms expanding energy envelope. Definitely going to research a little more on the two antivirals. Look forward to the Netflix series. Please keep writing, big fan.
It is always a joy to read your blog because you are such a gifted write. I am so sorry to hear your condition has had a relapse. I will always value your positivity in your writing. You are a gift to all of us. Keep writing because your voice and your opinion is so important. Sending you love and a virtual hug!
Sorry to hear your latest news. I wonder if you could speak to write, because you are a great writer. Best wishes, hoping you get a reprieve from this current downturn.
Omg Jamison…. I’m so sorry about your relapse. All I can say is STAY ON THE VALCYTE!!! I’m going on three years and feeling better every day… I do not crash anymore and I am almost a normal human again. Also can I use some of your writing in a presentation I am doing on ME in social media for some Stanford peeps 🙂
Xoxo,
Mia Anderson
Hahaha almost a normal human. You’ll always be a normal human to me. Yes of course you can use my writing. Hope it goes well at Stanford!
Thank you for sharing what’s working for you. Wishing there was another way for you with great side effects. None of my business but wondering if a lower dose might come with less side effects. Again just thinking aloud or in writing. I agree, I too think it’s somehow viral. My basis for the assumption is odd but I’m sharing anyway. When I consume crushed garlic in raw honey before bed I can pull out of flares a bit easier and I generally feel 5% better. I don’t know what garlic and honey do but I’ve read they kill ‘bad things’. Super technical term there.😁 I can only consume garlic/honey for a couple weeks at a time so I don’t burn my stomach lining. My point. If it wasn’t a virus this would likely do nothing. Wishes for nothing but upswing for you.
I never would have thought about the EBV, since they stopped testing that after two back in my teens. It would also make sense that having a chronic infection is why I get so many other infections so easily. It sure sounds like you’re onto something and I’m definitely going to see about getting some old tests redone to see if that’s why I’ve relapsed.
I am so sorry you relapsed after such an incredible improvement, although thankfully you may have found what works for your stability! And you are so very right – we want to feel the comfort of others who also have it and knowing we aren’t alone, plus just getting that why/how. I hope the meds kick in soon and proves your theory correct! *crossing fingers* Thank you for the hard work to write such a possibly life changing post for others!!!
Hi!
I just wrote a long note to you about how I had something similar to you and I’m am radically better. I now know the true cause and found excellent medical care and am a million times better than I was and active where I once was I’m bed all the time.
It’s very late and I have to go to bed.
The long note I wrote disappeared when my phone battery died.
So I’m writing to you as a bookmark that I need to touch base with you later. As I’m overtired because it’s late, please email me or hopefully I’ll remember to write later so to help perhaos with recommemdatioms of what helped me. I very much look forward to your feeling better and my sharing with you what happened for me. So, again, this is a bookmark to continue this conversation.
Bookmark
I so relate to this. Who wants to permanently be on drugs or supplements when we don’t truely know the harm vs the good? It’s confusing and frustrating but I’m glad you’ve worked out a rough working strategy! I’ve had some success with antiviral adaptogen herbs, if you wanted to trail a more natural aid any time. (Ashwaganda, Astralagus, Holy basil, Rhodioli). Wishing you better health soon. X
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Hi
I’ve seen your case on Netflix
Have you ever been checked for CCSVI ?
Some of the Lyme disease cases are initially CCSVI cases .
Please check it
Thanks Evie. Will do!
Hey! I’m so excited to find you online, my issues started after a near fatal car accident too.
I’m hoping after my videos get posted I can help bring ideas to anyone to help them, even on a little level.
I think strong mental stability is my one strong suit. But there are times where o feel my countenance failing me.
My videos should be up soon. It’s just so hard to edit them, and I’m so ch a blabber butt no one would want to watch them live…lol… although I’m sure many will have to be uploaded like that.
I’m seeing a Dr Bulstrom in Blackfoot ID he’s head on international autoimmune system. And doing a protocol that Lord Willing will heal me too, there is where I got my diagnosis as ME stage 4, I knew I had It just st didn’t think I was stage 4.
Anyway, I’m sharing the protocol and lucky, me ITS ALL NATRUAL products! So it’s tryable for everyone who financially can.
Message me at mycrazysexychronicillnesslife@gmail .com
Or follow my new instagram page @mycrazysexychronicillnesslife
I currently have a twitter account
@lilshabbyshack
Either way, reach out to me. I’d love to lift you up for prayers and maybe stay connected on any new treatments I’m doing😇
Hey Jamison,
I’m Robert and I just watched episode 2 of afflicted, and I agree with the doctor on the episode. It looks like nerve damage for not only the accident, but also I think the dead lifting you were doing in the episode was a major strain on your back and neck nerves. I’m curious if you’ve ever had any massage therapy? I sincerely think that would be very helpful. I’m not saying an hour a day , but more like 4 to 8 hours per day. I know this could be extremely expensive, but regardless it’s something to consider. I have had neck and back issues growing up and to this day I still have a lot of pain in my neck. I’m no doctor, but I somewhat understand the human body. I hope you’re able to find relief soon!
Good luck,
Robert Sieradzki
Hi Jamison, I just saw your story in Afflicted and my heart totally goes out to you! My dad has been suffering with ME/CFS too for about 30 years. I have my own struggles with Lyme. In my heart of hearts, I 100% agree with you that all of this is viral. Anthony William, medical medium says this, as well…. Have you heard of Stemaid? This is the place that saved my health. I’m trying to save the $ to take my dad as soon as possible…. it’s a game changer! They do RHP/EBOO ozone autohemotherapy and stem cells. It kills the virus. If you’re on Facebook, there is a group for stemaid that has more info. I wish they could come to you….. I pray you get better. Sending you hugs and good healing vibes!
I feel for everyone in this documentary. There is a clinic called AK Chiropractic Center outside of St. Louis Mo that has been doing great things for patients suffering from ebv, lymes, cytomegalovirus, mold, parasites, yeast, liver detox (glutathione), bacteria etc. I went there for chronic pain in my hip and knees and they treated me for parasites, yeast, lymes and supported a variety of other hormone and neurotransmitter pathways and the pain went away with a variety natural herbs, vitamins, minerals that they tested on my tongue with muscle testing and also frequency therapy. They showed and taught me how health starts from the inside and the organ muscle connection. I had a friend with bells palsy/lymes that went there for about a month and no longer has bells palsy or lymes!
Like so many others, I saw your story on Netflix. Your struggle touched my heart the most. To be honest, I have several auto-immune conditions, and am currently suffering a significant relapse of sorts. I was in the midst of a pity party when I watched your story. I desperately needed the reminder that I should get out of bed…not because I feel like it, but because I can. I should feel thankful that I can still brush my own teeth. Instead of feeling frustrated that those around me have no concept of what I deal with physically, mentally, emotionally (and even spiritually, at times), I should offer up a little support and empathy for others who fight similar battles day after day. I’m sure some people would feel grateful to be able to trade their problems for mine.
From one thirty-something person wondering how the hell their life turned out like this to another…I say to you, you’re the real MVP. Battle on, my friend. You are stronger than you think.
I was like you!! Have you tried DAILY shots of B12????? !!!!!!!
I am at year 29 with M.E. I had sudden onset with Epstein Barr in 1989.
I was only 21, it ruined my life.
I am trying to find out what people with the severest M.E. are eating?!
In 2012 I had a sudden mild infection that caused severe spinning and inflammation in my brain. It took me 6 months to figure out that all proteins from grains, beans,eggs,nuts and seeds and nut milks were causing the hideous spinning. All dairy,except butter (no protein in butter),causes the horrible spinning as well. It does not just effect the neurologic symptoms but also the pain, the mitochondrial failure and nausea, migraines,the visual special effects like the “after image” you see when looking at a blank space after you have looked at something else, blurred vision, double vision etc…..etc…….
I cannot eat even a teaspoon of those proteins or I have inflammation in my brain, spine, and heart. My heart will start beating irregular if I eat a small amount. With restriction of those proteins I can get relief, but not a cure. When summer hits and the pollen, mold, and grass cuttings all instantly hit it causes the inflammation in my brain, spine, and heart to suddenly get worse. Horribly worse.
I have learned that it is the infection in the gut combined with eating specific proteins and inhaling proteins that makes everything worse.
Our mucous membranes have to be damaged not just in our gut.
I just want to know what the severely ill are eating?
If I ate grains,beans,eggs,dairy,nuts and seeds, I would be completely bed bound and have to have a caregiver. I would not make it long because the symptoms are so severe with just the spinning alone. I would not be able to stand it.
My restricted diet is the only thing keeping me alive at year 29.
I get protein from dark chocolate, nutritional yeast, and there is protein in vegetables. It is not easy.
Hi Jamison, I’m watching you on Netflix. I was wondering if you ever thought about trying CBD oil/ balm/ capsules…? I just watched you try to get out of bed and I started crying as you almost put your feet to the floor, I was cheering you on! It’s so sad to see you want to live so badly and do everything you use to do. I can only send some good vibes and hopes that you at least find a treatment that helps you! Much love to you and your family!!!