I've given up on all treatment

[littlebird6180]

I posted a couple of times that I was doing really well on a cocktail of various b vitamins and other supplements and prescriptions. But since then, I've had a major turning point that has made me go off almost everything and I doubt I'll go back.

I went to Costa Rica for dental work and had to go on antibiotics for yet another uti/kidney stone infection. For a while now, I've been struggling with irritability and depression and anxiety. I just decided I wanted to take a break from everything while in Costa Rica in light of the infection and antibiotics and I was sort of shocked that while my energy decreased, my moods improved dramatically and I felt calm around my kids and family. A week into the trip, I took a niacin (still having not made the connection) and found myself feeling extremely irritable and snappy with my family. My friend who takes the same called my a couple days later coincidentally saying she felt like the b vitamins really negatively impacted her mental health. So I decided to stop fighting what felt like a losing battle for now.

I don't know how to phrase this well but basically I've been fueled by such intense determination and optimism and refusal to accept that I couldn't biohack this disease and solve the puzzle.

Figuring out the cardiac component was magical and going on beta blockers was a game changer in many respects. But I'm still tired all day, still prone to medical crises. The supplements gave me a strange shell of energy but below the surface was still the same tired body.

I've invested so much money, time, mental energy, cabinet space to finding a tailored cocktail that would jumpstart me. And yes, the supplements gave me a boost but i hadn't realized how horrifically they were effecting my mood and making me miserable to be around. So I just want to be done. I'd rather spend my energy with my kids than swimming against a current. I'm going to try Pilates out and I'm going to stay on the beta blocker and the LDN and ketotigen. The latter has helped me with allergies a lot. I thought the LDN did nothing and went off it and felt these very familiar symptoms where I felt like I was constantly fighting off the onset of a cold. Starting LDN made those symptoms go away. So I'll stay with it.

I wish I could get energy...real, genuine energy. Not yawning all day long or feeling like a lazy lump. Maybe a big breakthrough is coming but for now I don't want any more doctors appointments, cabinets filled with supplements, body like a lab rat.

The only thing I am still interested is FMT but not even enough to go out and do it yet...just a someday maybe kinda thing.

Anyway, it's very bittersweet to give up trying and admit defeat.

 

[herpesbaby]

I'm sorry. I know that so many people are gonna hate me for what I'm about to write but... I've never believed in any supplements or vitamins.
Pills from pharmacy might help one thing but be bad for your liver or kidneys.

 

[maybe some day]

Dont feel bad for stopping. If it was easy to feel better, we all would be taking the same thing.
Ive personally known a few people that spent 30k plus, only in the end to feel marginally better or worse (and broke).
Hold yourself high and accept you did the very best you could.

 

[jpcv]

Hey, it´s not accepting defeat but understanding your disease and how your body responds to it.
maybe now, with a clearer mind, you can make better options.

 

[ljimbo423]

A week into the trip, I took a niacin (still having not made the connection) and found myself feeling extremely irritable and snappy with my family. My friend who takes the same called my a couple days later coincidentally saying she felt like the b vitamins really negatively impacted her mental health.

Hi littlebird6180 - Niacin wipes me out both mentally and physically. It slows down the methylation cycle, which for many with cfs, is already too slow, causing fatigue and irritability.

I'm sorry you're having such a hard time rate now. I hope it will pass quickly for you!

All the best, Jim

 

[Gingergrrl]

I'm going to try Pilates out and I'm going to stay on the beta blocker and the LDN and ketotigen. The latter has helped me with allergies a lot. I thought the LDN did nothing and went off it and felt these very familiar symptoms where I felt like I was constantly fighting off the onset of a cold. Starting LDN made those symptoms go away. So I'll stay with it.

Anyway, it's very bittersweet to give up trying and admit defeat.

The way I read your post is that you are going to be more mindful and selective with treatments (like the beta blocker, LDN, Ketotefin, and things that have helped you) but eliminate those that have made you worse. To me this sounds like a smart plan vs. someone who has given up or giving in to defeat.

 

[Wishful]

We all want that magical 'something' that will return us to normal function. Sadly, ME doesn't seem to be a simple lack of nutrient or whatever. I don't expect a miracle in a bottle (or collection of bottles), at least not until the OMF or other such group makes a breakthrough. Since ME/CFS varies so much between individuals, I do think that some people can find minor benefit from some drugs or supplements, so I won't try to discourage people from experimenting with inexpensive substances. When I read about people taking expensive cocktails of supplements and drugs, I tend to wince a bit at the waste of money and the possible harm to health. I never get the feeling that they're really 'on to something'; if they're really excited about how effective it is, my inner response is 'Use the scientific method with proper controls to see if it really has any effect'., and I expect that they'd find that it doesn't.

For me, LDN does block the muscle aches, and the thyroid hormone T2 does block an increase in symptoms that would otherwise occur after three weeks. I've had other things that worked temporarily, but then stopped working, so those are now relegated to 'try once a year or so to see if they work again'. Other than that, I'm not taking anything regularly, since there isn't anything else that has a worthwhile effect on me.

I am expecting a drug that will be an effective treatment, since this disorder has proven to be reversible. However, given the complications of finding a drug that is effective, safe, and gets to the cellular location where it's needed, I'm not so confident that I'll still be alive when the drug becomes available.

Congratulations on questioning your assumption of the effectiveness of your 'cocktail', and of accepting the results showing that it wasn't really working. However, don't give up all hope of finding something that makes a cost-effective difference for you.

For anyone reading about someone's expensive 'magic cocktail' and wonder if you should try it, consider spending the same amount of money on really good chocolate, or whatever is your favourite treat instead.

 

[TiredSam]

Anyway, it's very bittersweet to give up trying and admit defeat.

I don't think acceptance or knowing when to cut your losses has anything to do with giving up or defeat, it's just acceptance, a very positive step that may well improve the well-being of yourself and those around you.

 

[littlebird6180]

I'm really overwhelmed by all the wisdom and support. Somehow, you've transformed my words of defeat into making me feel like I'd reached a point of my own wisdom. Thank you for that.

Yesterday, I actually did two hours of yard work in Miami in August and it made me feel great (and today I didn't wake up feeling like I couldn't move)--I want to focus on those kinds of accomplishments this year. My body will tell me what my limits are and I need to stop trying to trick it into forgetting those limits. I never would have been able to even stand outside in the heat if it hadn't been for beta-blockers. My husband even joked "did you take a double dose today or drink some salt water!?"

My 7 year old, who was always strong as an ox, is suddenly starting to get overwhelmed by health issues. She's got severe environmental allergies (mold, dust being on the level where we have to have an epipen) and has had chronic sinusitis and 8 cases of strep throat. 10 courses of antibiotics this year alone. And two nights ago, I am almost certain she experienced her first migraine. Anyway, this is all to say, she's starting to remind me of me as a kid. Constant health battles. So all I want is to be a model for her. I've found a way to work (built my own company), I have a happy life and have found love. And hopefully she'll never have to deal with doctors or family who don't believe in her issues.

I feel like I"m all over the place in what I'm writing but I guess am feeling a little emotional. I felt like a warrior in 2016 going to every specialist and aggressively researching, absorbing as much info as I could and declaring I was going to "beat this" and now I feel like I'm more in a zen mode. Going to let the researches wage that battle and in the meantime, just live my life.

I certainly support anyone still out there determined to find help. If I can offer any advice from what I've learned, is it's so easy to pour buckets of money down the drain into this. At best, the benefits are temporary and superficial. They never penetrate deep enough down to that bone-deep fatigue. At best, it's like drinking coffee after you've pulled an all nighter--a very brittle shell of energy that has no lasting benefit (and likely a lot of unwanted side effects). And yes, what everyone said, focus on the real science. Treat the known medical components--like POTS, thyroid, mast cell issues, migraines...etc. But there's no magic cocktail to remedy the big picture.

 

[ghosalb]

one day in the future, you will realize that this was one of your smartest decisions....you are much better off experimenting with as many green leafy vegetables as you can....one nutritional doctor said that we don't even know yet all the good stuff that are in all kinds of vegetables, and vegetables don't have side effects (generally)...good luck and best wishes for your daughter

 

[Bander]

I cycle through periods where I focus a lot on my health and the latest cfs research. I'm in that mode right now. Many of us are type-A personalty folks who tend to focus on a problem until we get it solved. But that doesn't work well with cfs. So I often switch to not paying that much attention to my illness and to research. You put it well when you said, "just live my life."

But let me put in a plug for a certain idea. It's not giving up to sometimes spend less time focusing on cfs. But there is something I felt I needed to give up. For years I struggled with the loss of who I was before I got sick.

I don't know if there are any Star Trek fans out there, but there is a great episode of Next Generation called Tapestry in which they explore how the course of your life can be altered. A character named Q allows Picard to see what his life would be like if he changed a small event from his past. He isn't happy with the change. He tells Q, "I can't live out my days as that person. That man is bereft of passion and imagination. That's not who I am." I often felt that way in the beginning. I couldn't accept where cfs had left me. And part of me felt that if I really loved life enough, I had to refuse, like Picard, to live out my days as some lesser person.

I was a great person before I got sick with cfs. I used to go to the gym three times a week and push hard on every exercise. I used to go on 3-hour bike rides on weekends. I used to have the energy to work hard enough to be one of the best at what I do. I used to go out to clubs and movies and I used to travel. But that person is gone and I had to learn to live with that. I had to allow myself to mourn the loss of that other person before I could discover who I am today and who I can be tomorrow.

And you know what? I'm a pretty great person today as well even though I lead a very different life. And if some day they find a cure, then I'll have yet another adventure to explore. And in the meantime, I'm just living my life.

 

[digital dog]

I turned a corner in my health when I shunned all medicine and supplements and doctors. Gave up searching for a cure and put trust in time alone helaing me. Trouble was I deveolped hypothyroidism! Im now taking homeopathic doses of thyroxine and doing better than ever.

 

[TigerLilea]

I threw most of my vitamin supplements out a few weeks ago. I discovered one of the things making my CFS much worse was my multi-vitamin. I've never been consistent about taking them; usually a few weeks to a month or two and then I would stop for whatever reason. I finally made the connection late last month that when I was extremely lethargic and napping for a few hours every afternoon, it was when I was taking the vitamins. Googling I found that this is a common complaint with a lot of people.

From now on my vitamins and minerals are coming from my food. With the exception of Vitamin B12 and D I'm done with supplements.

 

[littlebird6180]

I threw most of my vitamin supplements out a few weeks ago. I discovered one of the things making my CFS much worse was my multi-vitamin. I've never been consistent about taking them; usually a few weeks to a month or two and then I would stop for whatever reason. I finally made the connection late last month that when I was extremely lethargic and napping for a few hours every afternoon, it was when I was taking the vitamins. Googling I found that this is a common complaint with a lot of people.

From now on my vitamins and minerals are coming from my food. With the exception of Vitamin B12 and D I'm done with supplements.

Glad you made the connection with your multivitamin. It often shocks me how long it takes me to make those kinds of connections!

This made me think about a similar experience. For my POTS, I'm constantly told to take electrolytes and salt. I got salt sticks which are supposed to be the best of the best. But they make me so achy all over and don't seem to have the intended effect. Wonder if anyone else feels that way too about them?

I've also just decided to get my nutrients from food. We are fortunate to have many farmer friends and my husband is an excellent cook so we eat really well. And as for vitamin D, I live in Miami...so I just cross my fingers now and hope I get enough naturally.

 

[littlebird6180]

Also, another update--I posted on here that I was suffering from terrible hand tremors. I went through a battery of tests and doctors all came up with blanks. Well, after stopping all supplements...my tremors stopped!

 

[TigerLilea]

And as for vitamin D, I live in Miami...so I just cross my fingers now and hope I get enough naturally.

The only reason I decided to continue with B12 and D is that as we get older our bodies tend to have less intrinsic factor which is needed for B12 and our skin makes less Vitamin D so through research I found that these were the two vitamins that most doctors recommend people 50 and older take. Also, living in Canada means that we can't make Vitamin D from approximately October through to about May.

 

[Subtropical island]

I am lucky enough to have a doctor and practise nurse who, while taking my illness seriously and agreeing that I consistently fit the criteria for moderate ME/CFS (but because absolutely nothing helps except pacing we don't emphasise the label but rather focus on my health), are also prepared to consider every now and again that there might be something else.
I get blood tests a few times a year (will reduce this to 6 monthly or annually now we have a handle on it) to check for deficiencies and markers of illness. This helps in stopping me from getting caught up thinking my b12 is low (actually is the low end of normal range so occasional supplement is ok), or my rib pain is lack of magnesium etc etc. Anything that can be checked without costly tests is checked and when I first got sick we did the ultrasound and gastroscopy as well.

Recently my gastro symptoms got worse, my brain was struggling with language, pains etc and I had a fever so I took metronidazole as it was effective against a parasite and overgrowths that we had previously decided not to treat (we simply don't understand the gut ecology well enough to go in with poisons just becasue we can identify 1-2 not always pathogenic ones, amongst the overwhelming number of bacteria we can't identify).
The metronidazole worked for me. I was over the moon and, as things improved I almost thought I had a cure. Of course, it turns out I just fixed one problem (excessively frequent visits to the loo are bad for so many reasons).

The danger, I find, is optimism. I'm not saying we need to avoid optimism, but I am saying that it's risky, like getting a bit drunk (for a normal person, I can't tolerate alcohol for some reason), you have to watch what you do under the influence. I do too much, I think my limits have dramatically shifted when in fact I need to take it slow, maybe 10% more.
I crashed after the course of metronidazole and am only just climbing back to my baseline (thank you everyone here for the talk about pacing, it helps somewhat to deal with the inevitable guilt over my current limits) wth aggressive rest and a 7minute timer for all activity (7-15 minutes every 1-2hrs is the maximum in recovery and that includes email, reading, making a cup of tea, anything that uses my brain or body more than a familiar audio book or staring at the view).

When I'm optimistic I think I can do loads more, or I forget that rest does not include google or a little computer game, or emails, or this forum.
Optimism. I don't want to believe this is real. I want to believe that, with my excellent health markers (I was a very happy and successful woman with a husband, a fantastic lifestyle, fit enough to be a volunteer rural fire fighter, excellent health all my life, organic food from scratch with no preservatives or packaged foods etc etc), I must 'just' be depressed. That if I have a good attitude about things I'll be ok. That if I do my own ultra slow GET and practise CBT that I'll work my way back. Because that strategy always worked for me before with any minor health issues that cropped up. That if I take x supplement or y alternative 'treatment', I'll fix this incredible thing.

But I've tested it all and recorded my results: my attitude gives me 2-3 days of almost 'normal' sometimes (which takes weeks to climb back from). I can exceed my limits by 20-30% (but only for the occasional day).

The very best results come from cutting back absolutely all non-essentials, not seeing people who won't be easy (no matter why), taking absolutely no supplements my doctor wouldn't prescribe, and pacing religiously (I set a baseline that is lower than my normal capacity and try to do it even on bad days - but not on my increasingly rare crash days).
I get incredibly bored, itching to just do this one extra thing. That's actually a sign of health with this condition. I need to learn to stop thinking about everyone else and choose what 3 things I want to do each day based on what will make me happy and not push me too far.

Sorry, need to stop, running on like this is a sign I need to rest. Thanks for listening. I really just wanted to say that I think you're doing the best thing, that you will doubt yourself, and that we're here to reinforce the truths of what you're experiencing so you can be strong enough to accept the real limits and build something out of them.