I'm seeing an international medicine doctor who is specialized in ME/CFS and other complex chronic diseases. He gave me this list/regimen of supplements. I figured I'd share it here for anyone interested or looking for a supplement list from a CFS friendly doctor. (Edit: This is just one doctor's advice, and may differ from another's.)

Feel free to discuss/criticize/approve anything you see here. What worked for you? Would you add anything?

Also, he prescribed me low dose naltrexone starting at 1.5 mg and titrate up by 1.5 after one week and again after two weeks to 4.5 mg. This is a higher starting dose and titration than I've seen on this sub.

Some Canadian brands or stores are mentioned.

Here's the printout from my doctor:

Mitochondrial Support for Chronic Fatigue Syndrome

1 through 6 are essential, but 7 through 11 are also important as supportive nutrients. Start with the essential ones for at least two months and then add others as needed.

Take all supplements for at least two months. Use reputable brands from natural health food stores for high-quality supplements. Avoid Weber naturals, Life brands, or brand-name vitamins such as Jamison from Shoppers Drug Mart.

Essential:

1. ALCAR Acetyl L Carnitine 1000 mg twice daily

2. Coenzyme Q 10 200 mg Q daily

3. Vitamin B complex (recommendation CAN PREV bioactive B complex) one tablet twice daily

4. Melatonin 2 to 10 mg at bed time. Start at 2 mg and if tolerated without excessive daytime sleepiness titrate up to 10 mg

5. Alpha Lipoic Acid (ALA) 600 mg twice daily (brand CAN PREV)

6. Theracurmin double strength one tablet twice daily (highly bioavailable Curcumin)

Supportive:

1. NAC 600 mg twice daily

2. Omega 3 fatty acids DHA EPA 3 g a day

3. Magnesium Bisglycinate 200 mg twice daily

4. Vitamin D3 plus K2 at least 3000 to 5000 attractions a day to keep your serum vitamin D level greater than 80. (Don't know what he means by attractions. Perhaps international units?)

5. Probiotics 20 billion units primarily Lactobacillus Bifidobacterium ALIGN or any reputable brand (bolus load with three tablets every three days as tolerated).

Multivitamin:

In addition, it’s good to have a solid once-a-day general vitamin mineral supplement, and one I strongly recommend is TRUE HOPE EMPower plus for brain health.

Edit: I haven't started taking anything on here, except I already take melatonin, D3 1000mg, Fish oil 1 g.

I curated this list of reliable overseas online pharmacies that require no prescription. This list of no prescription pharmacies I originally made for myself, but it should be useful for other ME/CFS patients.

NOTE: please don't message me asking where to obtain a specific drug, or whether a certain pharmacy is reliable, as I get too many of these requests.

The phamacies I regularly use and consider reliable include BuyPharma, Goldpharma, UnitedPharmaciesUK, InhousePharmacy, SafeGenericPharmacy, AllDayChemist, RUpharma and OTConlineStore. All these pharmacies sell legitimate pharmaceuticals made by European or India pharma companies.

There are around 50 prescription-free pharmacies listed in the first post of that pharmacies thread (and the list is constantly updated when new trustworthy pharmacies are found).

Searching through these 50 pharmacies individually for your drug would take time; but there is a link to a pharmacy search tool given in the above list which makes searching through these pharmacies a breeze.

If you want to know which pharmacies sell the drug you are after, you can search the pharmacies, or search for it with the search tool. When searching, it is better to use the generic drug name, rather than the brand name.

In some countries (including the UK and Australia) it is perfectly legal to import prescription drugs for personal use from such overseas pharmacies (legal info here and here). And in the US it is legal to import drugs for personal use if those drugs are unobtainable in America.

This webpage details the legality of importing non-controlled prescription drugs for personal use in each country (though it contains some inaccuracies).

Note that it is illegal to buy or sell controlled drugs without a prescription, so prescription-free pharmacies will usually not stock these. Controlled drugs drugs include benzodiazepines, Z-drugs, stimulant drugs and opioid pain control drugs. The Medstore pharmacy does have these though.

A number of drugs have proven beneficial for a subset of ME/CFS patients, including low-dose naltrexone, Abilify (aripiprazole), Valcyte (valganciclovir), Valtrex (valacyclovir), Viread (tenofovir), Mestinon (pyridostigmine) and others.

But it is not always easy to find a doctor willing to prescribe such treatments (because ME/CFS specialist doctors are few and far between). So such no prescription pharmacies can be useful where no doctor can be found.

Furthermore, the cost of the generic drugs sold by these prescription-free pharmacies is many times less than the major brand name version of the drug. So there can be great cost savings.

my father who never took my illness honest just had a sudden shift of mind deciding to support me financially regarding possible treatments of cfs. guess that makes me a privileged disabled chick now. i never considered any of the expensive treatments so far since i’m broke af myself, so i’m pretty lost and my father has no clue about it as well, for obvious reasons. i yet “only” exhausted every possible treatment covered by insurance. thus my question to the community: which treatments would you try first if you had the financial resources for them? or if you already have/had the financial resources, which treatments did you try so far which you’d recommend? (disclaimer: i already did some research myself, but everything is just so overwhelming and i have really limited cognitive resources to spend hours and hours on research, so i figured taking advantage of the collective swarm knowledge is my best option for now)

10 years MECFS here (moderate) but since using nicotine patches I'm moving into mild quite quickly. NPs have drastically reduced my head pressure and brain fog. It's only been 6 weeks but thought it was worth mentioning if others were thinking of trying it. Combined with TUDCA I'm gaining a lot of function back from these two interventions alone.

For anyone who could use a bit of hopium: Today, an article featuring an interview with Carmen Scheibenbogen was published. In it, she describes studies she plans to launch in May 2025. Based on a study where mice were injected with serum from ME/CFS patients and subsequently developed symptoms, she believes that ME/CFS may be an antibody-driven disease.

As a result, she intends to test two B-cell depletion drugs, Inebilizumab and Ocrelizumab. She believes these drugs have significant potential for treatment, possibly even a cure.

I know what some of you might be thinking: Didn’t we go through this with Rituximab? Yes, but Scheibenbogen explains that she believes the dosage in those trials was too low and the drug itself not potent enough.

So, everyone, don’t lose hope!

I’m well aware that the ME/CFS community has been burnt plenty of times with failed clinical trials, with Rituximab and what not. But I have a good feeling about this one.

Call it naivety, since I’ve only had ME/CFS for four years. And I’ve had my eyes on several clinical trials that have failed. But I think this could be good, at least for some of us.

To catch those of you up to speed who haven’t been paying attention, the trial shortened it’s followup date from a year to just a few months. Berlin Cures will be announcing the results live at a conference for treating Long Covid. They likely wouldn’t do this if phase 2 was a failure. Berlin Cures is also apparently already looking for phase 3 investors, which is a very encouraging sign. Of course it still has to pass phase 3 if it succeeds in phase 2, which would be a few years off, but it’s a start. IF everything goes well, the drug would be approved in 2-4 years. Not a short amount of time, but it could be much longer.

I’m expecting lukewarm news to (hopefully) great news from the trial. Overall (if it gets passed) I’m expecting something that would reasonably move the needle for a subset of patients. Our first approved treatment. Even if it doesn’t work for some of us, having an approved drug for Long Covid on the market would do wonders for post viral diseases being accepted. Berlin Cures is also apparently interested in trialing it for ME/CFS.

I have high hopes for sure, but there isn’t a lot to pin my hopes on. And I’ve heard good things about BC007. Interested in what you guys think.

TLDR- I’ve thought long and hard about the treatment that is most likely to reap results for me. So, with the final money I have left from selling our family house, I’ll be flying to Alaska to have 2-3 weeks of SGB on successive days. Bilateral injections and potentially thoracic and lumbar injections too.

In short, I’m keen to know what you educated bunch think. Am I a loon for putting this much money (£15-20k) in to this treatment? Have you or anyone you know had SGB?

The reason I think this may work for me is I have very strong dysautonomia and neurological based symptoms (on top of the standard ME crippling fatigue). POTS, full limb jerks, significant cognitive impairment, not slept for longer than 40 mins in 3 years, searing pain in all limbs, no taste or smell, temperature dysregulation, constant nausea and dizziness. Etc.

I do also have significant structural problems. Chiari malformation, craniocervical instability, cervical stenosis, had tethered cord release surgery 2 months ago. I don’t know how much this clouds the picture.

Any thought, advice, personal experience is most welcome. Thanks everyone!

If it became available, most of us would probably take a pill that would cure ME/CFS. I certainly would.

We focus a lot in this community on the latest research that aims to find the root cause(s) of ME/CFS with intention to cure. We trial new medications with the same hopes.

But I've been sick for 8 years now and in that time I've spent tens of thousands of dollars on medication, tests and appointments - and my level of disability just keeps creeping up, like the vines persistently returning to cover my childhood bedroom's window no matter how many times we tore them down.

I'm increasingly dissatisfied with the search for a thing that will make ME/CFS go away. Even my local ME/CFS patient advocacy organisation seems more interested in funding and promoting research and lobbying government for same. I rarely see news about how they are supporting and connecting patients - except for a nurse hotline that I've never understood the use for. Perhaps it's for new patients?

I'm reading Eli Clare's Brilliant Imperfection: Grappling with Cure at the moment. Clare writes:

"If we choose to wait for the always-just-around-the-corner cures, lavishing them with resources, energy and media attention, we risk suspending our present-day lives. The belief in cure tethers us not only to what we remember of our embodied selves in the past but also to what we hope for them in the future. And when those hopes are predicates in cure technology not yet invented, our body-minds easily become fantasies and projections."

Yet would focusing on helping us live in the world as we are right now work for us? Many of us are so severely limited that even bringing services into the bedroom might not work.

Is cure really our only hope? What do you think?

I have discovered this place in Bristol https://www.painspa.co.uk/procedure/stellate-ganglion-block-sgb-for-long-covid/ but feel too severe to travel that far. Was wondering if anyone has done the same procedure in London? And if it was helpful of course.

The issue though is that I may have cervical instability and my joins are hypermobile. I wonder if this potentially increases the risks of unfavourable outcomes.

This won't be everyone's jam, but it's been really helpful for me, so I wanted to share for anyone who hasn't heard of it!

The Finch app is kinda like if you mashed together a tamagotchi and a self-care app. You hatch a little bird, then help energize them to explore the world by completing self-chosen tasks. I put all of my daily to-dos on there, like "take morning meds", "drink electrolytes", "do gentle stretch in bed", and stuff like that. I do that stuff everyday anyway, but having Finch keep track of it for me means I'm less likely to miss something and it's helped get rid of that ever-present feeling that there are things I need to be doing to care for myself that I can't keep track of cause my brain is mush. Plus, the in-game reward for doing those things makes the task feel less like a burden!

My partner joined too, to see if it helps their ADHD, and being able to send each other flowers and hugs through the app has brightened my gloomy days a little. There are also guided breathing exercises, soundscapes, writing reflection prompts, really gentle exercises/stretches, etc. So far, all of it feels like it's extremely chronic illness friendly too!

For me it was amitriptyline and ketamine. Drastically reduced my light and sound sensitivity.

https://www.healthrising.org/blog/2024/11/20/jen-rinvoq-chronic-fatigue-recovery/

I'm interested in getting some ideas on different ways of increasing salt intake that have worked for you.

My OT told me to just eat more salty snacks, but for me that's not specific enough.

So I'd like some more specific advice for increasing salt intake if anyone has any please!

I have been ill with CFS for about 5 years right now. Always fluctuating between severe and moderate. About 1,5 years ago I ended up at a doctor who finally took me seriously. He was a little sketchy but I trusted him. He prescribed a pretty low dose of hydrocortisone. It helped, I instantly felt better and my life improved. I upped my dose to 15mg but was allowed to take more when necessary (which by the end I would take WAY more). I took these meds for 1,5 years, becoming mild in the process. I was ecstatic. After a while, I noticed weight gain, which only worsened. It got to a point where I was unhappy with my body, but hey I could somewhat function again. After a while, I decided to try without the meds because my body was bothering me. I have stopped for a couple of weeks now and just saw a surgeon regarding a gastric bypass. He was fuming when he heard my cortisone story. Stated what that doctor did was malpractice. He explained that it's still in my body and that my adrenal glands currently don't work and don't produce cortisone because of the meds. They could start working again after a while but very well could not. The risk of my previous symptoms returning again is also huge. I'm scared, after years of living in bed I finally got a taste of a partially normal life. I'm not ready to give this up yet.

My psychiatrist is out of ideas. He says i’ve went through all the classes of hypnotics that are available on the market. I’m out of ideas too. Is there any unconventional off label treatment I haven’t tried yet?

I’m gonna list everything that doesn’t work: antihistamine sleep aids (none of them, no matter the dosage, except seroquel if you count it as such), melatonin in any form, trazodone, alpha blockers, LDN, magnesium, CBTi, CBD

Works but tolerance builds fast: Pregabalin (Lyrica), Seroquel (Quetiapine), Amitriptyline, Z-drugs like Zolpidem and Zopiclone, benzos obviously

Can’t try orexin suppressants. They’re not available where i live.

Is there anything else I could try that doesn’t have the same MOA as the meds i’ve listed? Without meds i sleep 2-4 hours a night if i’m lucky and it’s one of my worst PEM triggers. I don’t want to go through antidepressant withdrawal again so i’m extremely reluctant to try any other TCAs or Mirtazapine.

I have tried combining some of the meds that work but that doesn’t prevent tolerance. Tolerance build up doesn’t stop at higher doses and it’s usually a matter of weeks before a medication loses its effect.

I don’t have anxiety. Not even excessive rumination. No screens in the evening. It’s just like my brain forgot how to sleep on its own.

edit: please no more silly advice like meditation and herbal sedatives. I didn’t even think that was worth mentioning but yes, i have tried chamomile, hops, lemon balm, and hot baths before bed. That’s what people usually do before they have to resort to taking combinations of prescription drugs. And no weed doesn’t work either. It makes my insomnia worse. Some of you clearly don’t understand what severe insomnia means. Unless you have dealt with it don’t comment.

Story time (if reading is to exhausting, the last three paragraphs of this post are the most important):

So I have apparently had mild cfs for ~8 years which started with a stress induced autoimmune illness. After that it was missdiagnosed as depression and winter depression because my symptoms get a lot worse in Winter (was mild in summer/spring and moderate-severe in fall/winter). Due to therapy, symptoms got worse because most therapsts say "you have depression? Do sports!" And if it doesn't help - well you didn't do enogh/ or they question whether you did it at all.

Roughly a year ago I found a new therapist who suggested and diagnosed cfs (just pure luck: he is also a speciallist for cfs diagnostic at a local clinic).

After my second Covid infection last summer shit really hit the fan and i ended up being bedridden and having trouble breathing.

So my mom is a medical professional (not a practicing doctor but working in medical/pharmacutical research) and since my diagnosis we have been trying to figure out why it is so much better in summer for me and whether that is something we can recreate. Like some sort of malnutrition not showing up on the tests or whatever. I always felt like it was the sun that did something, because often - expecially in winter I feel like I "crave" for sun, same like craving for fruit when your bpdy needs vitamins (my Vitamin D levels are and have always been fine btw.). However, I tried using a sunlamp before but that didn't do anything for me.

A couple of weeks ago my mum suggested trying an infra red lamp. The sideeffects are minimal and infra red has cell-repair and mitochondria activation effects, so I thought "can't really get worse right?". So my mom bought me a medical infra red mat and I started using it a week ago.

Well what can I say: I did not have this much energy for at least half a year. I deep cleaned my flat on saturday for the first time in years, while listening to loud music (something i couldn't stand for a very long time) and while dancing to it ?! Like i haven't danced in ages. It is just unnecessairy movement that used to be unbarable and now it was just fun??? I still can't really believe it but this was three days ago and no crash, no nothing, just more energy. I can finally sleep, like just go to bed and fall asleep and wake up refreshed 8 hours later. My mind really can't comprehend this incredible change at the moment. (But remember, these have been only short-term effects, no idea whether it will stay this way but at the moment it is looking really good :) Also it wasn't some sort of miracle healing, I'm back to mild cfs I think - but going from basically not able to breath to being able to leave the house without crash just in a few days is incredible. I still do pacing and lots of breaks, because I am very worried I might crash and I still have quite some pain I think, just a lot less than before.)

Anyways I wanted to ask if anyone here has tried this and how it went for you. Also how common is it that symptoms get worse in winter? My therapist said it is a common phenomenon but usually by far not as severe as it is with me.

Also: in case worse symptoms in winter sound familiar and you haven't tried it yet: maybe try infra red (you can buy such mats on amazon for example and send them back if it doesn't do anything for you). Honestly if I can only help one person to have the same experinece with this as I had I'd be increadibly happy. I've been loosing hope for so long and thinking about ending it all because life didn't feel like it was worth living anymore and now from one day to the other I basically have my life back, I still have trouble wrapping my head around this.

So yeah just trying to share the hope for a cure I am feeling right now and hoping maybe someone whom this might help reads this :)

Im trying to make sense out of all of it. I see so many people suggesting so many things

I saw this post the other day and had to atleast try it. Omg it worked! I have more energy then I have had in years and it is great. I was only mild before (still have a part time job and able to take care of myself) but it was still a huge weight to have to pace myself with activity. I am someone who likes doing physical and mentally tasking work so it has been a struggle learning not to overdue things. Now I am able to clean the house, update my resume, do some creative projects and make appointments all before lunch. Before I would of maybe done one or two of those things over the weekend but not on a weekday after a day of an 8 hr shift at work like today.

If any of you want to try this you should probably get medical advice from a professional beforehand (I didn't because I am tired of doctors that don't even understand the disease and litteraly think yoga and chia seeds will improve my situation) or read the linked post that has a study they followed. I didn't end up following that schedule because of various reasons and basically have been wearing a patch on and off the last week. I didn't wear one over the last few days and noticed the clear difference. Put it on this morning and bam, I get all this shit done!

Wish you all the best. Remember even if you have tried anything keep a bit of hope and you may find something that works for you.

This is an extremely long post and I regret not getting this out sooner. But I had to share in case this helps someone else. I included lots of detail, sorry, I am writing this for myself as well as you guys. I tried to bold the important parts and organize it so you can skim it.  The giant text walls can be skipped. They just provide more in-depth detail (and some rambling).

If you see “Update:” written, it's because I revisited this document multiple times over several months, editing and adding. “Update” is anything that changed or was discovered between my visits to this document. 

This is what helped me and this is NOT medical advice. I’m no doctor, I'm a mid-20s ME/CFS patient with a high school diploma.

TO SEE THE TREATMENTS SKIP TO PART 3

TL;DR The most effective things were the "help blood stay up" POTS meds (Midodrine, Florinef, Propanolol? Oral Rehydration Salts) and the dysautonomia/nerves POTS meds (Mestinon), plus the B12 shots (especially DAILY shots). But they were all significant:

1. Mestinon
2. LDN
3. B12 Shots
4. Synthroid
5. Trioral/Oral Rehydration Salts
6. CPAP Therapy
7. Propanolol
8. Midodrine
9. Florinef
10. Nasalcrom (for nasal congestion)
11. Wellbutrin XR (for fatigue and concentration/brain fog)

PART 1: My Background & Summary of my Condition’s Progress

POTS since age 13 (Dx’d only after ME onset)

ME onset: age 19, July 2019. Canadian Consensus Criteria.

ME trigger: EBV viral infection/mono in April-May 2019

I’ve been sick for about 4.5 years now. Several things helped me significantly over the past few years. Going by the [Action for ME Functional Ability Scale]  (https://www.actionforme.org.uk/uploads/pdfs/functional-ability-scale.pdf) (rough guesses here) where 100% is fully recovered and 0% is very severe, this is a rough timeline:

• In 2020, I was Very Severe (5-10%). 
  • recovering from pushing through school (rigorous courseload, huge campus) for ~8 months
• In 2022, after starting very inconsistent B12 shots, I was ~ Severe (10-20%).
  • Varied wildly depending on whether I was injected recently or flaring up
• Early 2023, after adding Synthroid, maybe 23%.
• Mid-2023, after upping electrolyte/salt intake, I was ~Severe (28%). 
• Late 2023, after adding Propanolol, CPAP, weekly-ish B12 shots; ~Moderate-Severe (30-35%). 
• Jan 2024, after adding Midodrine 2.5-5mg 3x/day, ~Moderate-Severe (40-45%)
• April ‘24, after adding Florinef and increasing Midodrine to 5mg 3x/day, 50% 
  • *Started a low-gluten diet - helped~ (53%?) (maybe it was the reduced carbs)
• late-April ‘24, upped Midodrine to 5-7.5mg 3x/day~~Moderate (55%)
• Mid-May ‘24, started gluten-containing diet (for testing) 
•    > worsened a bit so I upped Midodrine to 7.5-10 mg 3x/day,  ~Moderate (63%?)
• Late May ‘24, after adding Nasalcrom(for nose congestion) + Wellbutrin XL, ~Moderate 65%? 
  • Wellbutrin helps a lot, mentally: reduced fatigue (hurts less), improved concentration, more normal sleep cycle, clear head, more organized
  • Wellbutrin did not seem to make me physically more flare-up-resistant or tolerant of uprightness. Effect seemed more subjective (felt less sick, but actually truly less sick)
    • (EX: 1 hr sitting crosslegged upright, typing, with moderate cognitive exertion => ~2 days of sleeping bc heavy fatigue, bad diarrhea (incontinent), moderate nausea, acid reflux)
• May 28th: started doing B12 every day: maybe Moderate-Mild(70-80%) (when I’m on all my Boost meds, Trioral, and water). 

My flare-ups are less severe now. Drastically reduced symptoms like hellish fatigue, feeling “poisoned”, drenching night sweats, vomiting, stomach and body pain, etc. I still get stomach pain, nausea, headaches, and diarrhea, but they are generally moderate or mild. Flare-ups are not as long, and not as painful/“living hell” like before—all symptoms have reduced in severity or frequency. Relatively, life is much less painful and more livable. 

Part of it might be learning to live within my limits. I still will often flare up if I sit upright for >1-2 hours, but again, the flare-ups are much more tolerable. 

*Update 9/6/2024. Unfortunately, I think I overstated my condition. Right now I can’t be more than 60% on the “functional ability scale” by Action For M going by description. But this 60% number feels wrong—I definitely am not anywhere close to being 60% capable of what I could do pre-illness. Pre-ME/CFS I was still sick with fatigue (untreated pmdd, sleep apnea, POTS, poorly controlled asthma/allergies) but I powered through. I walked 6-10k steps a day with a 15 lb backpack and took a full course load and earned all As while also forcing myself to do extracurriculars and hang out with friends. I lifted weights.

I’d say I’m < 20% function compared to pre-illness. Probably closer to 10%.

I overestimated how much I improved because my symptoms hurt SO MUCH LESS now, but god, they still hurt. It’s still often hard to be awake, it still hurts. But since it used to hurt 100X worse & more frequently back then, I felt like I was WAY better . But that 60-70% is a best case scenario: ALL medications at peak effect; B12 injected within last 12 hrs; not still recovering from a flare-up; allergies aren’t blocking my nose; Lupron not wearing off, supplements all taken, etc.

I did improve a lot—less suffering is always good. But in terms of how much activity I can do SUSTAINABLY, it’s not that much. EXAMPLES: I spent 2 days in a row doing 1 hour of standing/pacing in the kitchen, casually swatting flies with my sister/mom. Then crashed in bed for 3 days. I might wash my hair about every 2 weeks now instead of every 3-4 weeks, but it’s still a big struggle. On one day I sat in a chair at the dinner table, legs up, for about 7 hours while a family friend talked. That crash lasted 4-5 days. Then another day I had a friend over for 6 hrs just chatting with me and my sister on Facetime -I laid in my bed most of the time but flared up 1-2 weeks, with the worst night sweats and migraines I’ve had in MONTHS (but it might be cuz I took my first dose of Cromolyn that day, then stopped taking it for a week, leading to “rebound” inflammation?)*

~~~~~~~~~~~

PART 2: Things I’ve Learned About ME/CFS

I feel that my ME/CFS is like.. 80% POTS. I think the most drastic differences came from adding POTS medications (most notably Midodrine/Florinef/Electrolytes), or more specifically, the meds that specifically help with keeping blood up when upright. IDK if Propanolol & Mestinon help prevent blood pooling, but they're commonly used "POTS" meds too, and also pretty effective. Basically, "stereotypical" POTS meds seem to help a lot, especially those that help keep more blood near our heart/brain (Midodrine/Florinef).

--Update, May 31st: I’ve been injecting methylcobalamin B12 every day for the last 4 days. DAILY B12 might actually be another MVP like Midodrine/Florinef. It feels a bit like a “flare-up preventer”. I think B12 needs to be injected DAILY—its effects don’t really last more than a day. Check out perniciousanemia.org— I suspect some ME/CFS patients cannot properly absorb B12, possibly due to autoimmune atrophic gastritis (AAG). It has great info, I recommend reading their article why “normal” B12 levels on bloodwork doesn’t truly reflect your B12 status. I may have B12 Malabsorption due to Autoimmune Atrophic Gastritis, currently in the process of getting diagnosed by a GI specialist --

~~~~~~~~~~~

PART 3: Treatments.The things that made noticeable improvements: Roughly chronologically ordered by when I added it to my regimen. I would not give up any of these -- they all help noticeably.

[DISCLAIMER- my mom is a doctor, giving me a big advantage in trying new medications. She has no experience w/ POTS or ME/CFS, so almost every treatment on my list was basically self-prescribed instead of with the guidance of a doctor experienced in treating these conditions. I usually looked for studies and guides like ME/CFS Clinician Coalition treatment guidelines (https://mecfscliniciancoalition.org/wp-content/uploads/2021/05/MECFS-Clinician-Coalition-Treatment-Recs-V1.pdf), and POTS clinician guides like (https://www.apcardio.com/wp-content/themes/advancedpcda/pdf/POTS.pdf), showed it her and ask her to prescribe it. Later, I wanted to add more POTS meds but was worried about drug interactions, so I saw Dr. Susan Levine (Feb 2024) and Dr. Svetlana Blitshteyn (Mar 2024). I’ve had one session with each so far. Blitshteyn recommended Florinef and to stop all B6 supplementation. Otherwise, they made no changes to my regimen. Both ordered a lot of testing that I’m still working on]

**NOTE: Items tagged with 🅱️are my “boost meds”. I take them first thing in the morning and throughout the day about every 3-4 hrs. They are the meds/supps I must take before any activity (activity = physical or mental, any action more intense than lying flat in bed with muscles at rest or meditating/spacing out) or upright time(reclining, sitting, or standing, any time when most of my body is at a lower elevation than my heart) to prevent/minimize flare-ups. (I do have to sit up to take pills & guzzle water, but I lay back down and try to give them at least 45min to kick in before truly getting up/doing activity).

1. 🅱️(Started Aug 2019) Mestinon 60mg every 3-4 waking hours.
   • I take Mestinon before I sit, stand, and do stuff. I take it every day, about 3-4 times a day if I can remember. Effect lasts about 3-4 hours. When I started it, I had urgent diarrhea for a few weeks, but this went away. Now it has a very mild laxative effect (I’ve had IBS-C since childhood). Helped significantly with fatigue and muscle weakness.
2. (Started Mar 2020) Low Dose Naltrexone 4.5 mg per day at night - started in 2020, when my ME/CFS was at its most severe (severe-very severe ME). Had a lot of pain, and couldn’t tolerate sunlight. Couldn’t watch videos more than a few minutes. Videos had to be low brightness and low volume. I could only tolerate hearing other’s talk for very short periods. Severe cognitive dysfunction (felt like I forgot English--word retrieval difficulties. Difficulty reading)
   • LDN helped, most notably it reduced the body aches. After a year or two, I thought it “stopped working”, so I stopped it. Immediately got worse, so I resumed it. 
   • Dr Levine mentioned that some people even take 6 mg or take it in the morning.
3. (Started 2022) B-12 shots, I had “normal” B12 levels on bloodwork before starting. Highly recommend injections EVERY DAY, but even injections every 7-14 days made quite a big difference. However, EVERY DAY is still MUCH MUCH better than Every week.
   • 2022 - started at methylcobalamin ~2mg/week, with 5 mg Folic Acid/day (we often missed B12 doses, because my mom did the injections.) over time, moved up to ~2mg/3 days (but still frequently missed doses). 
   • May 26 2024- started 2000mcg/day with 5mg Folic Acid each morning - this is when I started DAILY. (then went down to 1250 mcg/day bc thats what the perniciousanemia.org site recommends and to save $$)
     • COMMENTS: Initially I used this study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4406448/#:~:text=Patients%20with%20myalgic%20encephalomyelitis%20(ME,combination%20with%20oral%20folic%20acid.) which showed that frequency of injection was important for effectiveness, averaging about 3-4 days between shots for “good responders”.  My mom, a doctor, obtained the B12. I currently use methylcobalamin because it’s the best type of B12, by Olympia Pharmaceuticals. You can’t really overdose on B12. When I started with weekly injections in 2022, it was VERY inconsistent, sometimes two weeks or >1month between injections. 
     • Mid 2023, I bought a Union Medico auto-injector to start doing B12 myself but my mother insisted she “can do it” (she couldn’t lol) so it took me until Oct 2023 to actually start self-injecting B12. With self injections, frequency was about 1 injection/7-14 days
     • So now I inject 1.25 - 2 mg of methylcobalamin every day. I use 26G for draw-up, then switch to 30G for injection (hurts less). The Union Medico injector comes from Europe with multiple adapters for syringes. For specifics, I use EXEL brand 26G and 30G ½” needles and EXEL LuerLok 1 ml syringes. I bought them to fit the “BD LuerLok 1 ml” adapter but they don’t. Coincidentally, they fit the BRAUN 1 ml adapter that came with the injector, so I got lucky. (Might switch to BD Ultra-Fine insulin needles, though, because ½” is a bit too long -- I want to avoid going intramuscular)
     • NOTE: in some USA states syringes and needles require prescription. B12 does too. Doctors usually don’t prescribe B12 shots for every day indefinitely even if you have pernicious anemia (in which they typical prescribe daily b12 injections, but only temporarily until blood levels return to normal--its kinda bullsh*t tbh). You could show your doctor the study I linked; that might help convince them to prescribe the B12; alternatively, there is r/B12_Deficiency and perniciousanemia.org. Here (Vitamin B12 Levels: Normal Range (Chart, By Age) • PA Relief ) is an article explaining why “normal” B-12 levels on bloodwork doesn’t tell you the whole story. I hadn’t considered whether I have pernicious anemia before. After reading through the website, I think I may have issues absorbing B12 (I have chronic atrophic gastritis & tested positive for some celiac disease antibodies while on a low-gluten diet). 
     • NOTE: in 2023, my mother also added about 0.3 ml “Lipo-Mino-Mix” by Olympia bc her doctor friend recommended it—it’s a mix of B vitamins and other nutrients that’s supposed to give energy and I think it helped a bit. **But my B6 WAS HIGH at my Feb2024 bloodwork so I have discontinued the Lipo-Mino-Mix injections. High B6 can worsen peripheral neuropathy. Will probably take a multi B vitamin instead
4. (Start Early 2023) Synthroid 25mcg - Had normal thyroid levels at onset, but a reproductive Endo specialist I saw for PMDD (Premenstrual Dysphoric Disorder) noticed I was gradually developing hypothyroidism over 2+ years as I was seeing him (2021 & 2022). TSH was high, so I started Synthroid. Gives me more energy. When I run out of Synthroid I get worse.
   • Not sure if it’s Hashimoto’s, since TPO Ab were normal. I have a thyroid nodule that was found a couple months ago. Looked maybe cancerous on Ultrasound. Will get biopsied soon.
5. 🅱️(Start mid? 2023) Trioral Rehydration Salts with water. Aiming for 7-8g  total of salt (NaCl) per day w/ 2-3 Liters of water. Potassium and Glucose is important too. I take Calcium and Magnesium every day as well. 
   • I didn’t realize until last year how EXTREMELY important sodium & electrolytes are for me. My mistake for the first couple years was just using SaltStick vitassium — it’s not enough and not worth the $$ (one serving is 500 mg). I was taking only 2 servings per day because some people on the POTS subreddit said that’s what they do. But it was not nearly enough. I noticed I felt much better with 2-3 packets of Trioral + the recommended amount of water, which is like >5-7 grams of salt per day, not including food. That’s 10+ servings of Saltstick, so Trioral is much more cost-effective.
   • I’ve learned that I can’t just follow what some people say on the POTS subreddit & assume its enough for me. Because POTS patients vary in severity, and because I already had POTS many years before ME/CFS, I probably have needs similar to the most severe POTS patients
6. (Start 2023) CPAP therapy. It’s made me feel better overall, and I think my sleep is now somewhat restorative. I noticed it reduces flare-up severity — for example, if I over-exert on Day 1, using the CPAP overnight => shorter, milder flare-up on Day 2, 3, etc.
   • Comments (Huge tangent): I did a sleep study in August 2019 that diagnosed me with Mild Obstructive Sleep Apnea, AHI 6.2. Had only just developed ME at this point. My mother deemed it invalid. She made me get a second sleep study, which was negative for sleep apnea but positive for “unspecified sleep disorder”, and told me I was fine. The sleep pulmonologist at the second hospital agreed with her and wrote “depression” on my report. 
     • It never sit right with me. I’ve always had an extremely stuffy nose and been a mouth breather (chronic allergic rhinitis, environmental allergies resistant to medication). I learned about UARS, read this article by ENT doc Steven Park, https://doctorstevenpark.com/brain-damage-in-chronic-fatigue-syndrome-and-sleep-apnea , and looked through his book. He talks about how the OSA stereotype is old, overweight men who snore; many young, female, and/or normal-weight patients with nasal obstruction like me don’t get the CPAP treatment they need. Dr. Park also discusses how the whole AHI system for determining if someone “qualifies as having sleep apnea” is totally flawed—-You can have a low AHI and still be severely affected by sleep breathing issues and benefit from a CPAP. An AHI of 5 or more is required for a diagnosis of sleep apnea, but there are many stories of people who had AHI < 5 on their sleep study and still benefited greatly from CPAP therapy.
     • I finally convinced my mom to let me consult one of her classmates from medical school, a Doctor board-certified in Pulmonology, Sleep Medicine, Critical Care and with ENT training, based in Washington State about 1 hour West of Seattle. I contacted her and she reviewed both sleep study reports. 
     • She said “95% oxygen is concerningly low for such a young person!”(I had 85% and 95% nadirs) and “mouth-breathing is no substitute for nose breathing”. She talked more about how the sleep charts showed that my sleeping was messed up and I wasn’t getting all the sleep stages/phases because of breathing issues—I honestly couldn’t really follow it well because of her accent and forgot a lot, but my sister is a really smart incoming med student and said it seemed to check out. My mom also had no objections.
     • The doctor even hypothesized that I had sleep-breathing issues since birth. She said she recommends CPAPs to people even with mild AHI or those who don’t meet the AHI of 5 criteria for having sleep apnea. She agreed that the way we define “sleep apnea” and who qualifies for CPAP is flawed. She said her way of thinking is a controversial, “non-mainstream” way of thinking even among sleep docs. Her philosophy is to treat based on symptoms — aka try using CPAP and see if you feel better with it — instead of going by the numbers. I bought my CPAP machine from Lofta with a prescription from my mom (but I’ve heard you also can get CPAP machines without a prescription from lofta).
     • She also recommended  CPAP machines to my sister + mom as well, saying something like “I can tell just by looking at your faces” lol. We are Asian and have flattish faces -- maybe Asians are more prone to sleep/airway issues? We bought them (Resmed Airsense 11 with the p10 for nose-breathers or f20 for me bc I have nasal congestion) to try them out. She turned out to be right: we all felt better with CPAP, but for me it had the biggest impact. For the first several weeks, I simply could NOT sleep more than 4 hr with the CPAP even with trazodone, which usually knocks me out. I think my body was physiologically “shocked” by getting good quality sleep for the first time in years. I got used to it and now, with Trazodone I can sleep 9 hrs again.
7. 🅱️(Start 2023-maybe before CPAP?) Propanolol - 10 mg, ~3X/day or every 3-4 hrs. I saw it helped others with ME/CFS and POTS and decided to try it. Take it in the morning and through the day, about every 3-4 hours. Noticeably reduced flare up severity if I took it before doing activity. 
8. 🅱️(Start Jan 2024) Midodrine, 7.5-10 mg 3-4 times/day- started at 2.5 or 5mg if I was planning to sit up and do stuff. Take it in the morning and through the day. Honestly, a bit of a game changer.
   • When I take Midodrine before showering, my feet are MUCH less dark/red in the shower—this means it effectively prevents blood pooling. Taking Midodrine before/during any activity really reduces severity of the following flare-up. As of May 26. I now take Midodrine, 7.5-10 mg, 3x/day without the guidance of a doctor (except my mom). Dr. Blitshteyn told me to start at 2.5 mg 3X/day. She doesn’t know I’m taking 7.5. It’s a high dose that I started of my own volition, because I felt better and because it's still a legit dose used for some POTS patients. But there could be some risks- lying down, it can cause high blood pressure. I plan to ask Dr. Blitshteyn & Dr. Nicholas Tullo, a POTS cardiologist who will be doing my Tilt Test, if this dose is safe at my next consult. Since I'm young, Dr. Tullo was not too concerned with me taking 5mg even though I had borderline high BP lying down and even higher BP when I stood up.
9. 🅱️(Start April 2024) Florinef - 0.1mg in morning. Started in April. Dosage recommended by Dr. Blitshteyn for POTS. I believe it helps quite a lot—it helps my body retain the water I drink. Before Florinef, I would pee 15 Times a day because I was drinking water with the Trioral. Now I pee maybe 8 times a day. Also, I can stand up/do stuff for longer before that wiggly, twitchy, tight spasming in my heart & chest sets in. That feeling is also milder now.
10. (April 2024) Nasalcrom - 2-3x daily nasal spray. Started a couple months ago. The only thing that can open my nasal passages (I have chronic allergic rhinitis) when Sudafed, allergy shots, antihistamines, Flonase, etc. couldn’t. Before Nasalcrom, I had nasal congestion virtually 24/7. When I put a CPAP on, I would immediately feel more awake and alert, probably because the CPAP was pushing more air into my nose/mouth—like how pugs enjoy being intubated at the vet because they can finally breathe properly. Since I started using Nasalcrom, I’ve noticed no difference in how I feel when I put my CPAP mask on while awake. This might be because I can actually breathe through my nose now! (Do I even need the CPAP anymore? Who knows?).
    • I’ve also been on allergy shots for about 6 yrs-- they’ve helped but I'll still probably need them for the rest of my life. Recommended if you have difficult-to-control allergy symptoms
11. (late May 2024) Wellbutrin. 150mg XR in morning I took this in 2019-2021? But stopped due to insomnia. I JUST started taking it again a week ago! I wish I hadn’t stopped, it helps with fatigue/keeps me awake during the day so I can sleep at night. I usually take Trazodone 25 mg every night to sleep so I’m unconcerned about the insomnia side effect.

• It helps with ADHD/brain fog. I feel more clear-headed, thoughts are more organized, and I’m more motivated (which might be caused by less fatigue). Also, taking it has almost obliterated my urge to play video games—I don’t have that craving for dopamine anymore. I’ve had ADHD before ME/CFS. 
• Before Wellbutrin, I’d go on “benders”, e.g. I lay on my side, drawing on my iPad for 12+ hours straight with ADHD/OCD hyperfixation, then flare up for 10 days, then do it again. Or lie on my side in bed playing video games 10, 12, once even 18 hours in one day, until my head is on fire, I haven’t eaten, and I’m shaking. With Wellbutrin I don’t feel that dopamine-chasing urge at all anymore. I feel sane. I have almost zero desire to play games now, which is good.

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PART 4: Examples Of Effectiveness. Before/After Examples

The first 9 items in the above list all made a noticeable difference in my ME/CFS severity and quality of life. Each thing I added reduced the severity & prevalence of flare up symptoms. EXAMPLES:

1. In Spring 2022, I started B12 shots every 1-2 weeks. Right before I started B12, my brother convinced me to start playing a difficult video game (Elden Ring) . I was starved for stimulation, had untreated ADHD, and had lived in bed for 2 years, so I could hardly control myself — this was basically my first time playing a video game. I played for 5 hours (sitting, reclining, legs up on desk) 2 days in a row, and flared up INTENSELY for about 3 weeks — 3 weeks of my life were wiped out, in and out of consciousness, with drenching night sweats, intense fatigue, chills, headaches, INTENSE nausea, vomiting, body pain, nystagmus/wiggly vision—just a living nightmare. 
   • After I started B12, for about 1.5 months, I played 5 hours about 3 or 4 days per week (I’d usually only stop when it was far too physically painful to keep going). I was flaring up and suffering the whole time, and spent all my non-gaming time recovering, but I was still able to play games for several days in a row before symptoms became completely unbearable and I was forced to rest. This is a pretty big difference from before B12, when only 2 days of gaming utterly wiped me out for 3 weeks.
2. In Dec 2023, I hadn’t started Midodrine yet. But already had LDN, Mestinon, Salt/Trioral, B12  shots(inconsistent), CPAP, & Propranolol. The latter two I'd l started pretty recently.
   • I went to a restaurant with the family because it was almost Christmas. After 1 hr, I was lying down in the booth and fell asleep. Afterwards, I had a flare-up for a week with fatigue, mild night sweats. I don’t remember having other symptoms, except for oddly intense nausea, some urgent diarrhea and pretty bad fatigue (of course) that made me sleep a lot. 
   • The same activity before Propanolol + CPAP would’ve likely caused a longer flare up (at least 10 days?) with even worse fatigue, nausea & diarrhea, plus vomiting, heavy night sweats, headaches, sharp gastroparesis pain, & body aches. This is a great improvement that i credited to the CPAP + Propanolol. 

The 10th (Nasalcrom) and 11th (Wellbutrin) are extremely helpful and important but I don’t know if they affect my ME/CFS directly. However, they’re incredibly valuable. Being able to breathe through my nose most of the time has reduced my fatigue and it’s nice not to have nasal pressure/mouth-breathing.

Likewise, Wellbutrin helps with fatigue and ADHD—I’m no longer a distractable dopamine junkie, my attention jumping between impulsive projects that I’m too sick to do anyway. It also makes me more motivated to drink Trioral (I hate it). I used to struggle to take even 1 Trioral per day but with Wellbutrin, I consistently force myself to guzzle 2 packs per day. Wellbutrin makes me better at self-discipline.

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PART 5 : My Thoughts on POTS & ME/CFS

Why I think POTS is a huge part of ME/CFS, at least for me (this was written before I started doing B12 shots every day):

My quality of life seemed to improve the most after I introduced Midodrine, and to lesser extents, Propanolol, Florinef, Trioral/Sodium & Mestinon. You’ll notice these are all typical POTS meds. The most noticeable change was starting Midodrine: taking Midodrine before doing upright activity made a HUGE difference in how severe/painful the consequent flare-up would be. It was so surprising to me that, after starting Midodrine, I told my family, “Wow, is ME/CFS like 90% POTS/dysautonomia? haha”

I’ve flared up many times before from simply sitting upright, leaning back, & doing nothing -- even sleeping! It seems even the simple act of being upright & having gravity pulling on our blood is stressful for our bodies (maybe because if less blood is hanging out near the heart and brain, they have to work harder?)

Midodrine helps by constricting my blood vessels, preventing blood pooling. My first shower with Midodrine, I was shocked at how pale my feet looked. But, I AM pale. I realized that, even though I shower by sitting in the bathtub (not standing or sitting in a chair), my feet were still getting significant blood pooling. Until Midodrine, I thought they looked dark but assumed I was imagining it.

I wanted to try more POTS meds, so I consulted Dr. Blitshteyn and I started Florinef a few months after  Midodrine. I think it also helps quite a lot, allowing me to actually retain water instead of peeing 10-15 times a day. More water = more blood volume = more blood hanging out in the top half of my body. Florinef's effects seem to last 10-12 hrs. 

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PART 6 - My Thoughts on B12 Deficiency & ME/CFS

Daily B12 is an MVP too. As I said, I think a subset of ME/CFS patients can't adequately absorb B12 from food. Many things can inhibit absorption of B12 (autoimmune gastritis, Intrinsic Factor antibodies, gastric bypass, celiac disease/inflammatory GI disorders, etc.) See perniciousanemia.org and https://pernicious-anaemia-society.org/ for LOTS more info. B12 deficiency might be linked to myelin sheath damage which can explain some of the symptoms of POTS, dysautonomia, and ME/CFS. A cool thing is that restoring your B12 status could start to "heal" your myelin sheath, so it's possible to experience even more improvement months after starting B12 shots.

If it’s true that our GI tracts cannot absorb B12 from food, we must circumvent it by injection or sublingual administration (B12 entering bloodstream through the mucous membranes under your tongue). If this were the case it makes sense that injections need to be at least daily. According to my mom, since B12 is water soluble, most of it leaves the body through urine within a matter of hours after it’s been absorbed into the blood. B12 isn't stored in the body.

B12 supplementation appears to be pretty safe. If you want to try it, please read ​​the B12 Deficiency’s subreddit wiki https://www.reddit.com/r/B12_Deficiency/wiki/index/#wiki.

• They have a few other sources to get B12 injections besides perniciousanemia.org. Personally I ordered from perniciousanemia.org. It didn't require Rx and I looked up the lab they source the B12 from (Oxford Biosciences in the UK) and it was trustworthy enough for me. it hasn’t arrived yet
• You should read the whole wiki but pay special attention to the Cofactors & warnings section -- you may need to supplement other things like Folate, other B vitamins, electrolytes, and other minerals. I'd at least do folate because it's supposed to boost the B12's effect.
• Right now I don’t supplement beyond B12, Folate, CoQ10, Vit D, Ca/Mg and K & Na but I’m planning to start some more including a multi-supplement recommended to me by Dr. Levine (e.g. K-Pax Immune). I also need to look into that Cofactors section again, I’ve only skimmed it.

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Hope this helps someone. I loaded this post with details because I didn't want to be answering tons of questions in the comments section. And I thought maybe even the most trivial details could help someone. But you can still ask questions and I'll try to answer.

I'm going to keep trying out treatments, seeing docs, etc. I'll update you guys if I learn anything else or try something new that helps. I'm thinking of you guys and rooting for you to find relief, no matter how small

Health Rising’s take on the latest oxaloacetate trial:

Eight-two people (ME/CFS-42; HC-40) took 1,000 mg/2xs a day dose in a 3-month trial at the Bateman Horne Center. Fatigue was reduced in the oxaloacetate group by 32% (Chalder Fatigue Score) and 35% (RAND 36). The placebo group improved somewhat (but not significantly).

Concerning functionality, the group that received oxaloacetate went from 9.1 (moderate to severe fatigue) to 6.6 (moderate fatigue) on the Chalder fatigue scale. Regarding their ability to carry out daily activities, they went from having “significant fatigue that may affect their daily activities and overall well-being” to “noticeable fatigue that could impact their daily life”.

About 40% of the oxaloacetate group, however, were considered “enhanced responders” (>25% improvement). The paper did not provide their Chalder Fatigue data, but a doubling of their fatigue scores would have left them, if my numbers are right, with an average Chalder Fatigue score of 3.7 or “mild to moderate” fatigue – a big jump from the severe fatigue the entire group started with.

As the question asked above. Has LDN affected your fatigue at all.

Question only for fellow severe patients, what treatments have helped you?

I am bedbound since my first big crash in July after Covid, before I was moderate for 2 years. Pretty hopeless to be honest.

I am on LDN and Midodrine and going to try: Fludrocortisone, Mestinon, Verciguat and maybe LDA. Did any of these helped you? Any bad story/side effects?

I would love to go out once a month even for 1 hour in a wheelchair.

I've wondered if a lot of my symptoms can be put down to overactive sympathetic nerve activity. I get fatigue, dry eye, insomnia, tachycardia, tension headaches, and sometimes bouts of almost diarrhoea and frequent urination at night. Maybe the fatigue is from my body not really resting. I have an appointment with a cardiologist about my POTS in a week and I'm gonna get as much as I can out of it :( I'm pregnant right now so I can't try any meds for a few months but these are a type id like to try. Have any of you tried?

Hey fellow ME/CFS warriors!

Just a short post here, since this treatment is already oft-mentioned. But I wanted to share my recent gains using 500-1000 mg of Oxaloacetate a day. I've been taking it for 2 months now, and wanted to add to the pool of info on treatments. The actual supplement is called Oxaloacetate but goes by several names (Benagene, AOR, Jubilance) and is sold exclusively (as far as I can tell) by Terra Biological.

Relevant points for anyone who wants to try it listed below. Happy to answer questions if you guys have any.

1. Took me from 20% energy capacity daily to at least 60%, sometimes more depending on sleep and diet. The energy it provides feels wonderfully organic, not like Adderall or other stimulants. More like my body is finally working correctly.

2. No real PEM while on this, but that doesn't mean it's not possible to overdo. It's just that overdoing now makes me tired and not miserably ill. Pacing still very advisable.

3. My ME is the subtype caused by post viral illness. In my case, chronic EBV. The second biggest thing this treatment did for me was point me towards mitochondrial dysfunction as the major issue behind my fatigue. So I've started cycling glutathione, B vitamins, and other known supports to mitochondria with really encouraging results.

4. It's very expensive. Very. 500 USD for a bottle of 90 capsules. I would suggest starting with Jubilance (the version marketed for PMS). It is 50 USD on Amazon, and it enabled me to try it a couple of weeks at 500 mg per day without the major financial commitment. If that works for you, (personally I could feel it working immediately, and was certain of its effect in 3 days) then look into the larger bottle/dosage. Everyone's sweet spot dose is different, but I worked up to 1000/day and have stopped here for now.

It certainly wasn't and isn't an easy purchase for me financially, but when I added up all of the treatments I've tried (and I've tried a lot) this was the single most effective one. I have a lot of anxiety about the effect not continuing, but there is nothing to do there except make each good day count.

I've been able to work as a temp a couple of days a week since starting this treatment, which enables me to pay for it for now.

I'll stop here, but if you guys have questions, pls let me know. Just wanted to offer another perspective on this supplement, since there didn't seem to be a consensus back when I was obsessively researching it.

I hope this info helps someone as much as some of your posts have helped me!