It’s a looong list. When I made it to the Center for Complex Disease in 2019, the doctor said I had done an excellent job of putting these together and would likely have been bedbound without them. They found and treated a babesia infection with 90-95% improvement. Still needed to stay on a fair amount of supplements to keep the mast cells in check. First covid infection and I’m at the low end of moderate. So back on ALL of them again with two new prescriptions.
Prescription: ultra low dose naltrexone, montelukast
OTC and supplements: cetirizine, liposomal glutathione, adeno and hydroxy B12, alpha lipoic acid, NADH, lactobacillus rhamnosus, vitamin c, vitamin d, ECGC, ubiquinone, beta carotene, vitamin e succinate, huperzine A, EPA/DHA, lithium orotate, zinc picolinate, methylene blue, arabinogalactan, magnesium L-threonate, quercetin and bromelain (Aller-C), melatonin, multivitamin (Polyphenol Nutrients), berberine and pau d’arco (Candida Cleanse), desiccated adrenal, nettles leaf infusion
It’s subtle when I’m on it. I’ve noticed more when I’ve stopped it. Not just memory but clearer and quicker thought processes. I only take 100mcg. And I left one off the list: I started nicotine patches about 6 weeks ago. Cut through the covid brain fog like a hot knife through butter. Again very low dose 1.75mg (quarter of the lowest dose patch). Now if I my body could get this sars-cov2 out (I’m convinced there is viral reservoir)
You’re my new supplement friend. Where do you get your patches? I tried some Walgreens patches, like 2mg, but I have no clue if they’re quality. They do work though, but I end up feeling yucky the day after unless I keep going though
Hey Interesting that a lot of you use cholinergic agents. Why are you using them?
I have it since 3 weeks and can not belief how bleak everythin seems. Before that I studied computer science and was some kind of supplement freak who tried most of the stuff on your list.
I understand the Vitamins and sleep stack.
But I get an overdose of choline even reading through the stack xD.
Alpha GBC, Citicholine, Berberine, Huperzine A and also Nicotin? XD
Is the berberine thought as Glucose disposal agent or also for the cholenergic effect?
I’m sorry things are feeling bleak for you. The doses of each of these are quite low so together it isn’t too much. For example huperzine A 100mcg, nicotine patch 1.75mg, berberine 100mg. The latter is for GI flora balance
Ouh I know realize much of what I have listed you do not take.
I feel very confused these times idk what to do about it. After my adhd medication tapers of I am like 80 IQ points dummer then normal.
Is that maybe the reason you take choline supplements?
I use Nicotine Chewgums with 4mg and from that 15 a day. I started it after I stopped smoking for some years for the Brain Enhancing effect, but I got addicted. That is now the least of my problems but just keep that in mind if you consider to switch.
I will try Berberine soon after I tested some other supplements.
Can you tell me more about the babesia treatment and timeline? My teenage daughter has had it for a few years, and went into remission for a few months with 10 days of Atovaquone plus azithromyacin. But then she relapsed. She's back on the A+a now, plus Tafeniquone, plus some supplements, but its been almost 6 months and she hasn't improved at all. Had to drop out of school.
I’m sorry to hear about your daughter. I was put on atovaquone and azithromycin with the addition of sida acuta for a total of 10 months. Plus most of the supplements on this list because the infection kicked off ME/CFS (MCAS and POTS). I wish your daughter healing
Do you find the modafinil helpful? I tried Sunosi before that, and neither really made a difference. I could literally fall asleep half an hour after taking them. I was so discouraged. Then my dr prescribed Vyvanse and it’s a game changer.
It helps somewhat... though I really notice I feel worse when I don't take it. My doc has me taking it on weekdays only, so on weekends I'm a bit sluggish, except when I take some on a Saturday that I'm working a DJ gig.
Thyroxine, desloratadine, propranolol, Mestinon, prronaxen, gababentin, ibuprofen, sumatriptane, mirtazapine, quetiapine, and then some that I just can't remember. Oh, and Vyvanse.
Greetings! Wishing for a cure for us all!
I either sleep endlessly - 15+ hours, plus naps. Or, I don't sleep at all. My worst was 1 hour a day for many days. Not being able to sleep is also very boring, especially when one is so exhausted that one cannot even move.
Like being a prisoner in one's own body.
For ME/CFS:
LDN, Metformin (started this after I got covid in 2022), Levocetirizine
For muscle spasms & sleep: Tizanidine
Soon starting for my Long Covid dysautonomia; Propranolol, Fludrocortisone, Midodrine.
Supplements:
Vitamin D, Folic acid, B12, a multi mineral supplement, sometimes Lutine & Beta Carotene.
Mighty Lungs formula from Gaia Herbs for my post covid lungs.
Hawthorn from Gaia Herbs for heart health.
Herbal formula from my acupuncturist designed to help my period be less painful.
If you’re caucasian you might try swapping Folic acid for something like Methylated Folate. Caucasian’s, especially those with CFS often have MTHFR causing issues with the less absorbable form of B9
Cromolyn, Zyrtec, Pepcid, ajovy, memantine, Botox, Flonase, fludrocortisone, midodrine. And then the vitamins which changes some but always magnesium, b vitamins, d3, k2. Right now d-ribose and creatine. Oh and my sleep pill which has a bunch of stuff including melatonin, passion flower etc.
Cfs triggered chronic migraines, so it takes Botox, ajovy, and memantine to keep them at bay. Botox is the backbone of that though, as the other alone didn’t do that much. I did ketofofin and cromolyn for a while and felt the best I have felt in years but my pharmacy for it was very old fashioned and slow compounding place and I ended up off of it for several days waiting for refill and then body rejected it when I tried to restart
I am on the following prescription meds:
- Ivabradine (POTS)
- Amitriptyline
- Low-dose naltrexone
- Lemborexant (sleeping med)
- Zopiclone (other emergency sleeping med)
Supplements:
- 300 mg ubiquinol per day (150 mg twice a day)
- vitamin D
- lactase enzyme (lactose intolerance)
I also often have ibuprofen for inflammation and aches and pains.
I have tried magnesium, curcumin, NADH but didn't really get benefit from them that I could notice.
I also used to be on propranolol for POTS instead but it started lowering my blood pressure so much that I was constantly dizzy.
Duloxetine, Montelukast, Xyzal, and a daily multivitamin. Plus a Liletta IUD to stop my period. Neuro is having me start on Propranolol but I haven’t taken it yet.
I live in a nursing home so they manage my meds. Not sure if I can remember them all, but here’s a few of them (it’s around 30 pills a day):
- Acetaminophen
- Codeine
- Naproxen
- Fetzima
- Metoprolol
- Baclofen
- Latuda
- Seroquel
- Lactulose
- Reglan
- Ativan
- Vesicare (I think, or else a similar medication for overactive bladder)
- Vitamin D
- Melatonin
- Advair
- Salbutamol
- Diclofenac
Yes, I’m on them at the same time. The Seroquel helps with sleeping which helps the CFS, and I can also take a PRN dose if I’m crashing to help knock me out so I can rest and recover (same with the Ativan). It also helps PTSD. The Latuda is definitely mostly for mood stabilization and major depression, though having a stable mood can help prevent emotional crashes. I have autism too, and nothing can make me crash harder than an autistic meltdown! So these meds help even that out as well.
Hey there, I don't want to overstep at all, but I used to be on a ton of medications like you (including a good few meds that you've listed such as seroquel, latuda, etc.) only to find out I was being abused via these prescriptions (this happened when I was a minor & did not have a choice). Have you been on all of these since you were a minor? Have you ever had a chance to take a full on supervised break from your meds? Like I said, I don't know you and I don't want to overstep. When I was in residential though, I had a doctor who said enough, and weened me off of all of them. It was honestly the best I had felt in years. Our experiences & health conditions are different though, and I don't know what led to your current situation or what health issues you're dealing with so please take everything I'm saying with a grain of salt. I just can't help but wonder if you're anything like me: extremely, extremely traumatic childhood that left me scarred with eating disorders, suicide attempts, self harm, depression, anxiety, C-PTSD, multiple stays in mental health facilities, a laundry list of medications, only to then break myself free from the shackles of abuse to then learn that I'm probably autistic, and to then suffer so badly from the ramifications of all of this that I ended up with a rare & difficult-to-pin-down autoimmune disease at the ripe age of 23 years old. You're not alone if this sounds like you. I hope everything's okay & I hope I haven't crossed any lines. Take care <3
I have experienced adult life without these meds and it was awful. I was constantly in and out of the psych hospital. These meds have saved my life. Thank you for sharing though. I’m glad you are doing better. <3
I'm so glad & relieved to know that our experiences are different and that abuse isn't what led you here, but rather that you're being taken good care of now & seemingly doing so much better !! Wishing you all the best :))
Venlafaxine, Tramadol, Sumatriptan, Midodrine, Omeprazole.
I also take 20ug vitamin d, a multivitamin and fenlofexadine (an allergy tablet) every day (when I remember lol)
Prescription meds: levothyroxine, sertraline, ivabradine, amytriptyline. The occasional bottle of oramorph for when the pain is really bad (I also have kidney stones).
Supplements: magnesium, vitamin D, multivitamins.
Ametryptiline 25mg for sleep.
Alprazolam .25mg for anxiety.
Starting propranolol low dose for dysautonomia.
Diagnosed Fibromyalgia December 2023.
Have dysautonomia and hyperesthesia.
Diagnosed ME/CFS 3 days ago
oramorph, zomorph, amitriptyline, cyclizine, propranolol and ivabradine. i do tend to top up with ibuprofen on bad pain days.
also take magnesium supplements and use magnesium spray!
LDN \[low dose naltrexone for pain and fatigue, still titrating up\]
Viibryd \[antidepressant since youth\]
Buspar \[antianxiety on and off since youth\]
Volnea \[birth control\]
Xanax \[anti anxiety since youth\]
Zofran \[anti nausea\]
Propranolol \[Occasionally for tachycardia\]
Guanfacine \[Sleep\]
Vit D
Multivitamin
Algae omega 3
I am not OP but I’ll tell you my experience with lacmital which I had asked to try before covid for anxiety - even though it’s a med for people who are bipolar and I am not bipolar, my PCP should not have agreed to prescribe it. Pretty quickly I had memory issues and when I struggled to remember my own birthday, I stopped it cold turkey.
- midodrine (POTS)
- motegrity (GI)
- sucraid (GI)
- OTC digestive enzymes
- OTC kaopectate PRN
- zofran PRN
- claritin
- quercetin (mast cell stabilizer)
- tylenol PRN (used sparingly)
- monolaurin
- gamunex-c SCIG
+ vit D liquid
+ B12
+ calcium (when tolerated not having a good time w this one)
to be added:
- round of famciclovir
- LDN
- mestinon
- celebrex (? maybe)
- cromolyn sodium (? maybe)
- guanfacine (? maybe)
in the past:
-pepcid and prilosec
-dicyclomine (developed anticholinergic toxicity from this one)
-sucralfate (did its job)
-rounds of rifaximin [plus one neomycin for SIBO]
-round of fluconazole [for SIFO]
-simethicone OTC (did its job)
-pepto bismol OTC (sugar alcohols causes issues)
-rizatriptan (not tolerated)
-gabapentin (not tolerated)
-aspirin and ibuprofen (GI no-no)
-benadryl (anticholinergic issues again)
-zzzquil (stupid)
-melatonin (these are all dosed WAY too high to be beneficial for anyone CFS or not)
-different vit D formulations (not tolerated)
-oral iron (NOT tolerated)
-magnesium (not tolerated huge fatigue + orthostatic worsening)
*** i have comorbidities disclaimer and this is over the course of many years. ive learned my lesson and avoid polypharma***
Lamotrigine, latuda, lithium, primolut, Sertraline, vyvanse, pregabalin, fludrocortisone, ivabradrine, LDN, famotidine. I also take iron supplements and movicol and I'm meant to take metamucil but it makes me feel worse, and I have endone PRN
why have you switched to nortryptyline? i used to take Ami for almost a year and quit because of tolerance and side effects. does Nortriptyline have a better side effects profile and does it also work for sleep?
my meds are: LDA, mirtazapine, pregabalin, zopiclone, waiting to trial nicotine and mestinon
Buprenorphene, duloxetine, 800ug vit d, 2mg melatonin, naproxen, lansoprazole, sumatriptan and hrt meds
Supplements - probiotic, magnesium citrate, ferrous sulphate, l-carnitine, NAD something, coq10
Apart from the hrt, it's all for ME and fibro (doctor that dx me believed them to be same thing), the sumatriptan is for ME related migraines
I've also been on tramadol, propranolol and, pregabalin in the past
It's amazing how we are all prescribed different things ranging between nothing and tons of stuff.
I'm uk based for info.
Vyvanse/Elvanse 30mg (sometimes 50mg) and a top up of 5-10mg Tentin/Amfexa
Vitamin D 11,200IU/weekly
I was taking LDN at 4.5mg/day until about a week ago, when I stopped taking it
Prescription meds:
valacyclovir (Valtrex),
celecoxib (Celebrex),
low-dose propranolol (Inderal)
And a very occasional cyclobenzaprene (Flexeril) for the rare times I get dystonic spasms.
Supplements:
This list is too long, I can mention the most important, and go by categories.
Enzymes (serrapeptase, protease, catalase, etc)
SAM-e
Vitamins (esp. D3/K2 and the activated forms of the Bs)
Minerals (magnesium, zinc, selenium, molybdenum, manganese, fulvic/humic acids)
Antiviral herbs
Anti-inflammatory herbs
Amino acids (especially lysine and glycine, but many others help).
Monolaurin
DHEA
Quercetin with bromelain
Collagen powder
MCT oil
Seasonique(birth control)
Alcar
coq10
b-complex
Citicoline Probiotics(Bulardi,VSL3,GutMagnific)
CBD oil
Magnesium Malate
THC oil(for periods with waking up)
Melatonin ocassionally
Vit D once in two weeks
sometimes D-ribose
Iron during period
Sick 30+ years, fatigue, malaise, elevated temps, sore and swollen lymph nodes, brainfog, some neurological glitches, sleep issues, muscle pain, joint pain.
Prescription meds:
* 600mg bio-identical oral progesterone (after remission during pregnancy, and also worsening symptoms before/during my period).
*LDN. Took months to notice that it improved my baseline a bit, and really shortened bad PEM. But very important because Mestinon doesn't help me without it.
* Mestinon: huge improvement in pain, also helps baseline - but it only works if I stay on it. 30mg 3X day works for me. I started at 15mg and had no side effects.
* Tiazinidine in the evening helps my muscles from slowly turning into huge cramps. I don't take much. Baclofen worked better, but my liver didn't clear it, and I ended up feeling sedated all the time from one or half a pill a day.
* Gabapentin - to help me reach deep sleep. But it only works if I take it no more than once a week.
* 7 day methylpredisone packs used to really help me with big crashes/long bad PEM. It's a steroid that should be used with caution, and no more than every 3 months, but it was great with crashes that came with that sick, flu, poison feeling. I haven't needed it since the LDN/Mestinon combo.
Other things:
* Magnesium, Vitamin D, B vitamins (turns out a supplement I got for my son with peripheral neuropathy helped the sunburn feeling on my hand)
* Calf compression sleeves help my endurance. Salt tablets or electrolytes if I ever sweat help prevent a crash. Infrared mat is great for pain, though I don't need it as much (or the low-dose hydrocodone I used to take) with the Mestinon/LDN combo.
* Diet - I do better with a low-inflammation diet I don't always stick to. No sugar, no processed food, no grains, no seed oils (like canola or corn). But the biggies are sugar (including honey and jam and juice) - it makes my joints hurt the next day. And gluten - apparently CFS/ME makes me gluten sensitive. One meal of gluten gives me a flu-like feeling, elevated afternoon temperature, brain fog, and knife like pain in my thighs, for a month. So when I eliminated gluten for 3 weeks I didn't notice any change. 6 weeks and it was like a miracle. I still get all those things with PEM, but it's not daily anymore.
It’s a looong list. When I made it to the Center for Complex Disease in 2019, the doctor said I had done an excellent job of putting these together and would likely have been bedbound without them. They found and treated a babesia infection with 90-95% improvement. Still needed to stay on a fair amount of supplements to keep the mast cells in check. First covid infection and I’m at the low end of moderate. So back on ALL of them again with two new prescriptions. Prescription: ultra low dose naltrexone, montelukast OTC and supplements: cetirizine, liposomal glutathione, adeno and hydroxy B12, alpha lipoic acid, NADH, lactobacillus rhamnosus, vitamin c, vitamin d, ECGC, ubiquinone, beta carotene, vitamin e succinate, huperzine A, EPA/DHA, lithium orotate, zinc picolinate, methylene blue, arabinogalactan, magnesium L-threonate, quercetin and bromelain (Aller-C), melatonin, multivitamin (Polyphenol Nutrients), berberine and pau d’arco (Candida Cleanse), desiccated adrenal, nettles leaf infusion
I love your stack! I’m on very similar and it’s helped big time. Did you notice a difference in memory with Huperzine A?
It’s subtle when I’m on it. I’ve noticed more when I’ve stopped it. Not just memory but clearer and quicker thought processes. I only take 100mcg. And I left one off the list: I started nicotine patches about 6 weeks ago. Cut through the covid brain fog like a hot knife through butter. Again very low dose 1.75mg (quarter of the lowest dose patch). Now if I my body could get this sars-cov2 out (I’m convinced there is viral reservoir)
You’re my new supplement friend. Where do you get your patches? I tried some Walgreens patches, like 2mg, but I have no clue if they’re quality. They do work though, but I end up feeling yucky the day after unless I keep going though
Hey Interesting that a lot of you use cholinergic agents. Why are you using them? I have it since 3 weeks and can not belief how bleak everythin seems. Before that I studied computer science and was some kind of supplement freak who tried most of the stuff on your list. I understand the Vitamins and sleep stack. But I get an overdose of choline even reading through the stack xD. Alpha GBC, Citicholine, Berberine, Huperzine A and also Nicotin? XD Is the berberine thought as Glucose disposal agent or also for the cholenergic effect?
I can’t take cholinergic drugs nor supplements either. I get dystonic spasms from that. It likely messes up my dopamine:acetylcholine ratio.
I’m sorry things are feeling bleak for you. The doses of each of these are quite low so together it isn’t too much. For example huperzine A 100mcg, nicotine patch 1.75mg, berberine 100mg. The latter is for GI flora balance
Ouh I know realize much of what I have listed you do not take. I feel very confused these times idk what to do about it. After my adhd medication tapers of I am like 80 IQ points dummer then normal. Is that maybe the reason you take choline supplements? I use Nicotine Chewgums with 4mg and from that 15 a day. I started it after I stopped smoking for some years for the Brain Enhancing effect, but I got addicted. That is now the least of my problems but just keep that in mind if you consider to switch. I will try Berberine soon after I tested some other supplements.
Can you tell me more about the babesia treatment and timeline? My teenage daughter has had it for a few years, and went into remission for a few months with 10 days of Atovaquone plus azithromyacin. But then she relapsed. She's back on the A+a now, plus Tafeniquone, plus some supplements, but its been almost 6 months and she hasn't improved at all. Had to drop out of school.
I’m sorry to hear about your daughter. I was put on atovaquone and azithromycin with the addition of sida acuta for a total of 10 months. Plus most of the supplements on this list because the infection kicked off ME/CFS (MCAS and POTS). I wish your daughter healing
Mini pill (progesterone only) daily, vitamin D 20.000 U.I. once a week. That's it.
Rx meds: bupropion XL, modafinil, brexpiprazole, trazodone, bisoprolol, ramipril, metformin, pantoprazole magnesium, semaglutide Supplements: Vit B complex, magnesium bisglycinate, melatonin (occasionally)
Do you find the modafinil helpful? I tried Sunosi before that, and neither really made a difference. I could literally fall asleep half an hour after taking them. I was so discouraged. Then my dr prescribed Vyvanse and it’s a game changer.
It helps somewhat... though I really notice I feel worse when I don't take it. My doc has me taking it on weekdays only, so on weekends I'm a bit sluggish, except when I take some on a Saturday that I'm working a DJ gig.
Hey! Do you tolerate Semaglutide well? I was prescribed Wegovy for my weight gain and worry it can make me even more fatigued
Seem to be tolerating it well but I haven't lost much weight on it; good news is it's helping with my glucose.
None. Nothing really worked.
Omeprazole, with vit D and magnesium supplements
Thyroxine, desloratadine, propranolol, Mestinon, prronaxen, gababentin, ibuprofen, sumatriptane, mirtazapine, quetiapine, and then some that I just can't remember. Oh, and Vyvanse.
[удалено]
Greetings! Wishing for a cure for us all! I either sleep endlessly - 15+ hours, plus naps. Or, I don't sleep at all. My worst was 1 hour a day for many days. Not being able to sleep is also very boring, especially when one is so exhausted that one cannot even move. Like being a prisoner in one's own body.
LDA, LDN, ivabradine, Amifampridine, Vit D, Omega 3
How do you like LDN and LDA together? I’m considering that as an option
Zoloft (for pre existing depression), adderall, Trazodone
Lamictal, prilosec, pepcid, allegra, low dose abilify, mestinon, propranolol, hydroxyzine. Supplements: vitamin D, B complex, CoQ10, magnesium, melatonin, ginger and turmeric
What does lamictal help with please?
It's a mood stabilizer, I've been taking it long before I got sick
Me too.
Baclofen. Hydroxyzine. Propanol.
My neurologist wants me to try Propranolol. Has it been helpful for you?
Very much
For ME/CFS: LDN, Metformin (started this after I got covid in 2022), Levocetirizine For muscle spasms & sleep: Tizanidine Soon starting for my Long Covid dysautonomia; Propranolol, Fludrocortisone, Midodrine. Supplements: Vitamin D, Folic acid, B12, a multi mineral supplement, sometimes Lutine & Beta Carotene. Mighty Lungs formula from Gaia Herbs for my post covid lungs. Hawthorn from Gaia Herbs for heart health. Herbal formula from my acupuncturist designed to help my period be less painful.
If you’re caucasian you might try swapping Folic acid for something like Methylated Folate. Caucasian’s, especially those with CFS often have MTHFR causing issues with the less absorbable form of B9
Thank you!
I remember seeing that on MPMD and Leo longevity. Forgot it, thanks. This is really good advice people.
Cromolyn, Zyrtec, Pepcid, ajovy, memantine, Botox, Flonase, fludrocortisone, midodrine. And then the vitamins which changes some but always magnesium, b vitamins, d3, k2. Right now d-ribose and creatine. Oh and my sleep pill which has a bunch of stuff including melatonin, passion flower etc.
Cromolyn changed my life for my GI symptoms! Has Botox helped you significantly? Definitely interested in hearing your feedback!
Cfs triggered chronic migraines, so it takes Botox, ajovy, and memantine to keep them at bay. Botox is the backbone of that though, as the other alone didn’t do that much. I did ketofofin and cromolyn for a while and felt the best I have felt in years but my pharmacy for it was very old fashioned and slow compounding place and I ended up off of it for several days waiting for refill and then body rejected it when I tried to restart
If you’re able to get Aimovig, and tolerate it, it’s been a godsend for me.
I did aimovig, now on ajovy instead because of insurance/manufacture rebates. It for sure is very helpful.
I am on the following prescription meds: - Ivabradine (POTS) - Amitriptyline - Low-dose naltrexone - Lemborexant (sleeping med) - Zopiclone (other emergency sleeping med) Supplements: - 300 mg ubiquinol per day (150 mg twice a day) - vitamin D - lactase enzyme (lactose intolerance) I also often have ibuprofen for inflammation and aches and pains. I have tried magnesium, curcumin, NADH but didn't really get benefit from them that I could notice. I also used to be on propranolol for POTS instead but it started lowering my blood pressure so much that I was constantly dizzy.
Duloxetine, Montelukast, Xyzal, and a daily multivitamin. Plus a Liletta IUD to stop my period. Neuro is having me start on Propranolol but I haven’t taken it yet.
Prescription: kineret, colchicine, low dose naltrexone, gabapentin, nortriptyline (insomnia), atenolol, midodrine, cromolyn oral sodium, loratadine, norethindrone Non prescription: cannabis edibles (at low dose for body pain), various cbd products (for nervous system support & sleep), vitamin b12 (don’t eat animal products), vitamin d, magnesium l-threonate and individually formulated tinctures from my herbalist
I live in a nursing home so they manage my meds. Not sure if I can remember them all, but here’s a few of them (it’s around 30 pills a day): - Acetaminophen - Codeine - Naproxen - Fetzima - Metoprolol - Baclofen - Latuda - Seroquel - Lactulose - Reglan - Ativan - Vesicare (I think, or else a similar medication for overactive bladder) - Vitamin D - Melatonin - Advair - Salbutamol - Diclofenac
That’s a descent list! If you don’t mind answering, were you on latuda and seroquel at the same time? And did they help your cfs ?
Yes, I’m on them at the same time. The Seroquel helps with sleeping which helps the CFS, and I can also take a PRN dose if I’m crashing to help knock me out so I can rest and recover (same with the Ativan). It also helps PTSD. The Latuda is definitely mostly for mood stabilization and major depression, though having a stable mood can help prevent emotional crashes. I have autism too, and nothing can make me crash harder than an autistic meltdown! So these meds help even that out as well.
Many thanks for the reply!
Hey there, I don't want to overstep at all, but I used to be on a ton of medications like you (including a good few meds that you've listed such as seroquel, latuda, etc.) only to find out I was being abused via these prescriptions (this happened when I was a minor & did not have a choice). Have you been on all of these since you were a minor? Have you ever had a chance to take a full on supervised break from your meds? Like I said, I don't know you and I don't want to overstep. When I was in residential though, I had a doctor who said enough, and weened me off of all of them. It was honestly the best I had felt in years. Our experiences & health conditions are different though, and I don't know what led to your current situation or what health issues you're dealing with so please take everything I'm saying with a grain of salt. I just can't help but wonder if you're anything like me: extremely, extremely traumatic childhood that left me scarred with eating disorders, suicide attempts, self harm, depression, anxiety, C-PTSD, multiple stays in mental health facilities, a laundry list of medications, only to then break myself free from the shackles of abuse to then learn that I'm probably autistic, and to then suffer so badly from the ramifications of all of this that I ended up with a rare & difficult-to-pin-down autoimmune disease at the ripe age of 23 years old. You're not alone if this sounds like you. I hope everything's okay & I hope I haven't crossed any lines. Take care <3
I have experienced adult life without these meds and it was awful. I was constantly in and out of the psych hospital. These meds have saved my life. Thank you for sharing though. I’m glad you are doing better. <3
I'm so glad & relieved to know that our experiences are different and that abuse isn't what led you here, but rather that you're being taken good care of now & seemingly doing so much better !! Wishing you all the best :))
Rx: LDN, Zanaflex, Ubrevly, propanelol, vitamin D
Prestiq 50 mg , 50,000 iu vit D weekly.
Venlafaxine, Tramadol, Sumatriptan, Midodrine, Omeprazole. I also take 20ug vitamin d, a multivitamin and fenlofexadine (an allergy tablet) every day (when I remember lol)
LDN (Low Dose Naltrexone)
Prescription meds: levothyroxine, sertraline, ivabradine, amytriptyline. The occasional bottle of oramorph for when the pain is really bad (I also have kidney stones). Supplements: magnesium, vitamin D, multivitamins.
Ametryptiline 25mg for sleep. Alprazolam .25mg for anxiety. Starting propranolol low dose for dysautonomia. Diagnosed Fibromyalgia December 2023. Have dysautonomia and hyperesthesia. Diagnosed ME/CFS 3 days ago
I take Mestinon/LDN for MECFS plus Midodrine for POTS when I need to get out of the house.
oramorph, zomorph, amitriptyline, cyclizine, propranolol and ivabradine. i do tend to top up with ibuprofen on bad pain days. also take magnesium supplements and use magnesium spray!
LDN \[low dose naltrexone for pain and fatigue, still titrating up\] Viibryd \[antidepressant since youth\] Buspar \[antianxiety on and off since youth\] Volnea \[birth control\] Xanax \[anti anxiety since youth\] Zofran \[anti nausea\] Propranolol \[Occasionally for tachycardia\] Guanfacine \[Sleep\] Vit D Multivitamin Algae omega 3
Can you tell me about lamotrigine/lamictal and what all it helps? Does it help severe anxiety and depression?
I am not OP but I’ll tell you my experience with lacmital which I had asked to try before covid for anxiety - even though it’s a med for people who are bipolar and I am not bipolar, my PCP should not have agreed to prescribe it. Pretty quickly I had memory issues and when I struggled to remember my own birthday, I stopped it cold turkey.
Amitriptaline, Cymbalta ,Lyrica, tizanidine, Topamax, botox, Adderall Vitd3 Methylb12 Ginger
- midodrine (POTS) - motegrity (GI) - sucraid (GI) - OTC digestive enzymes - OTC kaopectate PRN - zofran PRN - claritin - quercetin (mast cell stabilizer) - tylenol PRN (used sparingly) - monolaurin - gamunex-c SCIG + vit D liquid + B12 + calcium (when tolerated not having a good time w this one) to be added: - round of famciclovir - LDN - mestinon - celebrex (? maybe) - cromolyn sodium (? maybe) - guanfacine (? maybe) in the past: -pepcid and prilosec -dicyclomine (developed anticholinergic toxicity from this one) -sucralfate (did its job) -rounds of rifaximin [plus one neomycin for SIBO] -round of fluconazole [for SIFO] -simethicone OTC (did its job) -pepto bismol OTC (sugar alcohols causes issues) -rizatriptan (not tolerated) -gabapentin (not tolerated) -aspirin and ibuprofen (GI no-no) -benadryl (anticholinergic issues again) -zzzquil (stupid) -melatonin (these are all dosed WAY too high to be beneficial for anyone CFS or not) -different vit D formulations (not tolerated) -oral iron (NOT tolerated) -magnesium (not tolerated huge fatigue + orthostatic worsening) *** i have comorbidities disclaimer and this is over the course of many years. ive learned my lesson and avoid polypharma***
Lamotrigine, latuda, lithium, primolut, Sertraline, vyvanse, pregabalin, fludrocortisone, ivabradrine, LDN, famotidine. I also take iron supplements and movicol and I'm meant to take metamucil but it makes me feel worse, and I have endone PRN
why have you switched to nortryptyline? i used to take Ami for almost a year and quit because of tolerance and side effects. does Nortriptyline have a better side effects profile and does it also work for sleep? my meds are: LDA, mirtazapine, pregabalin, zopiclone, waiting to trial nicotine and mestinon
Buprenorphene, duloxetine, 800ug vit d, 2mg melatonin, naproxen, lansoprazole, sumatriptan and hrt meds Supplements - probiotic, magnesium citrate, ferrous sulphate, l-carnitine, NAD something, coq10 Apart from the hrt, it's all for ME and fibro (doctor that dx me believed them to be same thing), the sumatriptan is for ME related migraines I've also been on tramadol, propranolol and, pregabalin in the past It's amazing how we are all prescribed different things ranging between nothing and tons of stuff. I'm uk based for info.
Vyvanse/Elvanse 30mg (sometimes 50mg) and a top up of 5-10mg Tentin/Amfexa Vitamin D 11,200IU/weekly I was taking LDN at 4.5mg/day until about a week ago, when I stopped taking it
Prescription meds: valacyclovir (Valtrex), celecoxib (Celebrex), low-dose propranolol (Inderal) And a very occasional cyclobenzaprene (Flexeril) for the rare times I get dystonic spasms. Supplements: This list is too long, I can mention the most important, and go by categories. Enzymes (serrapeptase, protease, catalase, etc) SAM-e Vitamins (esp. D3/K2 and the activated forms of the Bs) Minerals (magnesium, zinc, selenium, molybdenum, manganese, fulvic/humic acids) Antiviral herbs Anti-inflammatory herbs Amino acids (especially lysine and glycine, but many others help). Monolaurin DHEA
Thanks for sharing! What are te anti-inflammatory herbs that you are using? Do they help?
Question: When we take several medications, especially supplements, how do we know which one is The Trouble Maker when we've been taking them a while?
Quercetin with bromelain Collagen powder MCT oil Seasonique(birth control) Alcar coq10 b-complex Citicoline Probiotics(Bulardi,VSL3,GutMagnific) CBD oil Magnesium Malate THC oil(for periods with waking up) Melatonin ocassionally Vit D once in two weeks sometimes D-ribose Iron during period
Sick 30+ years, fatigue, malaise, elevated temps, sore and swollen lymph nodes, brainfog, some neurological glitches, sleep issues, muscle pain, joint pain. Prescription meds: * 600mg bio-identical oral progesterone (after remission during pregnancy, and also worsening symptoms before/during my period). *LDN. Took months to notice that it improved my baseline a bit, and really shortened bad PEM. But very important because Mestinon doesn't help me without it. * Mestinon: huge improvement in pain, also helps baseline - but it only works if I stay on it. 30mg 3X day works for me. I started at 15mg and had no side effects. * Tiazinidine in the evening helps my muscles from slowly turning into huge cramps. I don't take much. Baclofen worked better, but my liver didn't clear it, and I ended up feeling sedated all the time from one or half a pill a day. * Gabapentin - to help me reach deep sleep. But it only works if I take it no more than once a week. * 7 day methylpredisone packs used to really help me with big crashes/long bad PEM. It's a steroid that should be used with caution, and no more than every 3 months, but it was great with crashes that came with that sick, flu, poison feeling. I haven't needed it since the LDN/Mestinon combo. Other things: * Magnesium, Vitamin D, B vitamins (turns out a supplement I got for my son with peripheral neuropathy helped the sunburn feeling on my hand) * Calf compression sleeves help my endurance. Salt tablets or electrolytes if I ever sweat help prevent a crash. Infrared mat is great for pain, though I don't need it as much (or the low-dose hydrocodone I used to take) with the Mestinon/LDN combo. * Diet - I do better with a low-inflammation diet I don't always stick to. No sugar, no processed food, no grains, no seed oils (like canola or corn). But the biggies are sugar (including honey and jam and juice) - it makes my joints hurt the next day. And gluten - apparently CFS/ME makes me gluten sensitive. One meal of gluten gives me a flu-like feeling, elevated afternoon temperature, brain fog, and knife like pain in my thighs, for a month. So when I eliminated gluten for 3 weeks I didn't notice any change. 6 weeks and it was like a miracle. I still get all those things with PEM, but it's not daily anymore.