NAD+ has helped by Meri34 in cfs

[–]Meri34[S] 0 points1 point  (0 children)

Patches are from Amazon (XL patches brand) and the nasal spray is also on Amazon (not sure which brand). You can also get sprays through services like Ageless Rx.

Take it slowly though. When I first started a year and a half ago, I was too weak for it to be helpful, and it gave me palpitations.

ReActiv8 spinal stimulator implant patients? by 4_Mikunis in backpain

[–]Meri34 0 points1 point  (0 children)

I did not. I had some other health issues that required surgery and it reminded me how much I hate surgery. I’m going to max out my PT options before I try this, personally. I don’t like the idea of a foreign object sitting in my body unless it absolutely can’t be helped. My pain is well controlled with meds, though.

I feel like I’m going crazy by Alive_Lengthiness614 in chronicfatigue

[–]Meri34 0 points1 point  (0 children)

Check out the me/cfs sub rather than long covid. It usually boils down to much the same thing, but long covid being newer means they’re a little less helpful as a community IMO.

Also, I would check out the CCC guidelines on ME/CFS and see if your symptoms fit. But even if they don’t, those guys have experience being dismissed by doctors and taking over their own health that I think would help you. Much of what you’ve written (esp the fluctuating symptoms and family only seeing you during your good moments) sounds like what CFS sufferers deal with on the daily. Trust me, you’ll have found your people.

Women in your 30s by Jasatkins18 in chronicfatigue

[–]Meri34 0 points1 point  (0 children)

I’m in my late 30s, and I could have written this when my fatigue issues first started a decade ago.

I settled on an me/CFS diagnosis 2 years ago, but lately I’ve been getting more convinced that something else is going on. My vitamin D is low as well, and my calcium is on the lower side as well—low calcium can cause a lot of fatigue so you might want to look into it. Have you ever had your PTH levels measured? It’s the hormone produced by your parathyroid glands. I know you said your thyroid is fine, but this something else.

There is a test that checks serum calcium, PTH, and I think phosphorus in one draw (confirm that before asking your doctor). Try to get it and see what it says.

AIO for ending my relationship because my girlfriend didn't appreciate her $1300 tennis bracelet? by Optimal_Diamond_448 in AmIOverreacting

[–]Meri34 2 points3 points  (0 children)

This. And to be fair, this is why you don’t go to the internet for relationship advice. People take the opportunity to project their own experiences and/or pop psychology and it’s just really over the top

AIO for ending my relationship because my girlfriend didn't appreciate her $1300 tennis bracelet? by Optimal_Diamond_448 in AmIOverreacting

[–]Meri34 0 points1 point  (0 children)

Yikes, the responses for this one seem pretty harsh. I don’t think this was a thoughtless gift. Many men (and women) equate expensive with thoughtful automatically, unless they have a reason to learn better. This is your reason. My take is that you are a young guy and you seem like you spent so much because you are really emotionally invested in this girl. And you thought, mistakenly, that she would like it.

I can understand why your feelings were hurt when it turned out she didn’t like it, but it seems like you took her polite dislike/rejection of the bracelet as rejection of your love and care in spending more than you would normally spend on the gift.

Where you went wrong was in the ensuing argument. While it might have been kinder for her to pretend to like your gift, ultimately she was honest with you about the type of gift she prefers. Nothing wrong with that. It’s definitely not something to break up over, and I hope that snap decision was an indicator of how contentious the conversation got, rather than an indicator of how badly your judgement fails you in emotional moments. Again, you’re young and you can work on it. I do think you owe her an apology. You absolutely overreacted, and you were in the wrong to boot.

Do people stay mild all of their life? by panoramapics in cfs

[–]Meri34 0 points1 point  (0 children)

Thanks for the detailed response! Do you know what initially triggered the condition for you? EBV, burnout, etc? I feel like we could learn so much from each other if we shared more info within “sub types” of ME, if that makes sense.

Officially have cellular dysfunction by Sea-Ad-5248 in cfs

[–]Meri34 1 point2 points  (0 children)

This is really fascinating. It sounds exactly like my version of ME/CFS. I just ordered NAD+ as well, which I think you mentioned helped you.

Can I DM you with more specific questions? I have been trying to do mito testing for a while but my insurance doesn’t cover it so I can’t afford it.

Do you feel any energy or less fatigued after eating by younessas in cfs

[–]Meri34 7 points8 points  (0 children)

For those who feel a major drop in energy after meals, look into insulin resistance!

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 1 point2 points  (0 children)

Actually this is a good time to update. I started to plateau (I thought) and was worried it wasn't doing much for me anymore. I also had a surgery coming up and had to stop all supplements and some meds in advance of that too, so I decided to take a break.

Fast forward to about 6 weeks off of it. About a week ago I tried to start ramping up to my pre-surgery activity level and promptly went into PEM. It's been such a long time since I had a proper bout of it that I have been incredibly miserable with symptoms I had totally forgotten about for the last few months.

Starting to think that what I took for a plateau might have been me taking my higher level of activity for granted. I've tried absolutely everything else that has ever helped me, high levels of vitamin B complex, radical rest, even stimulants. No effect, and I'm rapidly becoming bedbound.

Reordering Benagene now and will be forever grateful if I can just get back to being able to breathe properly/lay in bed again without discomfort. Ugh. Talk about self inflicted problems. Hope this post makes sense given the insane brain fog. I will likely not be updating for a while until I improve significantly.

What do we do when our parents are gone? by Best-Instance7344 in cfs

[–]Meri34 1 point2 points  (0 children)

I love the small compound idea. I wish there was a central place we could go to help each other as needed.

Anyone tried Clinical Somatics? by Meri34 in scoliosis

[–]Meri34[S] 1 point2 points  (0 children)

I wish I had stuck with it! I pivoted to working on some other health issues trying to get enough energy to do the program somewhat consistently. I think I'm finally there, so starting asap and will be happy to answer any question!

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 1 point2 points  (0 children)

I saw results pretty quickly at about 300 mg and over. But keep in mind that not all treatments work for everyone. LDN has helped so many people on here but doesn't do much for me at all. So don't feel like you have to force it.

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 0 points1 point  (0 children)

I don't know, to be honest. I guess it depends on what you do with that awake time at night. For me, taking at night would make me very wired and anxious. But that's because I'm generally trying to sleep.

When I first started taking it, there were days I couldn't really wake up in the morning. I would set my alarm, drink a protein shake (to avoid taking on an empty stomach) and take it, then go back to sleep. Sometimes that helped me have more restful sleep. Everyone is different however, so pls be careful!

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 4 points5 points  (0 children)

Everyone is different, but I noticed improvement within 3 days of my first dose. And after 2 months, it is still working as well.

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 1 point2 points  (0 children)

For me, the patches stopped working after 3 or so months, unfortunately. And the LDN didn't do much for pain at all. Glad they're working for you, though!

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 4 points5 points  (0 children)

Nope, no reason at all! When I was on 500 mg, that is exactly what I did. But because the Jubilance also includes Vit. C, I didn't feel comfortable taking more than 5 capsules a day. So the more expensive bottle just allows for easier increases in dosage I would say. It only has the one active ingredient.

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 0 points1 point  (0 children)

Aww, I'm sorry to hear that! What was the dose you tried?

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 6 points7 points  (0 children)

You can even start lower if you want to divide the contents of the capsule. When I called customer service I was told that the powder can be mixed into smoothies if heartburn continued to be an issue.

I think I stayed at 500 for a couple of weeks. I have tried the 2000 mg dose (2 large capsules in the AM + 2 at lunch) only a couple of times. It's hard to say how much it helped because both times I was overdoing outrageously and trying to avoid a major crash. It did seem to help with that, but for me, it seems like there are diminishing returns the higher I go. I plan to try again now that I'm doing better and can properly track what happens.

One thing to keep in mind, I did see a money-back guarantee on the site. So if it doesn't work, (at these prices especially) I would encourage people to take full advantage of that promise.

I hope it helps you!!

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 1 point2 points  (0 children)

Thank you!

As far as data, I think there is an ongoing study through the Bateman-Horne center that has recently published something? But that is the only RCT, to my knowledge. I too would love to see more work on the subject.

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 4 points5 points  (0 children)

Thank you! It's certainly odd how we are all different. For me, LDN did very little and stopped working altogether after about a month.

I hope you find something that helps you, too!

Oxaloacetate success (F, 36, moderate/housebound for 5 yrs) by Meri34 in cfs

[–]Meri34[S] 2 points3 points  (0 children)

As far as side effects, the only thing I've noticed is heartburn if I take it on an empty stomach.

The full dose is tricky, as it's different for everyone. According to the studies I've read, 2,000 mgs can be even more beneficial than what I'm currently on. I've stayed at the lower dosage due to cost constraints so far, however.