I am always looking to compare treatments with fellow chronic illness sufferers. Unfortunately we have to be our own lab rats because so much is unknown about our illnesses. Below is a list of some of the medications I’ve tried over the years. I was thinking about adding supplements, but I’d need an entire blog just for that.
Made Me Worse
- IV Arginine (scary worse)
- Hydrocortisone (15 mg) (overall worse)
- Fludrocortisone (overall worse)
- Midodrine (overall worse)
- Celebrex (made me weaker)
- Azithromycin (nauseous)
- Hydrocortisone (10 mg)
- IV Saline
- IV Vitamins (Infuvite)
Feel free to discuss any supplements or medications in the comments below. I look forward to reading your experiences and maybe even trying a new treatment. If you mention something you’ve tried, please also include what illness/symptoms it treated. Thanks!
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35 thoughts on “What Are You On?”
I use vitamin B1 (water soluble) 500 mg 3 x a day with benfotiamine (fat soluble B1) 160 mg 3 x a day. It’s the only thing other than Celebrex that has worked for me. Supposedly a lack of B1 in the cells/uptake into the cells makes it impossible to turn food to energy properly (that sure describes me). Started lower, worked up – been doing it for several years now. When I try to cut back I seem less functional. No side effects I can see. Details in various posts on my blog, but the idea came from someone at ProHealth. I don’t tolerate any of the other things I’ve tried, so I don’t even try any more. Original link: http://www.prohealth.com/library/showarticle.cfm?libid=18187, which then cites a study where people taking B1 for Ulcerative Colitis who also had CFS got better in their CFS symptoms as well. Very small study. Anyway, I’m still taking the stuff every day.
I am also very severe, unable to talk and completely bed bound. I found midodrine and flurinof also made me worse. I am considering mestinon. My doctors also mentioned IVIG but I don’t have autoantibodies in testing so they have decided not worth trying to get approval despite severe type II muscle atrophy in biopsy…
Hi. Ugh. Sorry to know that. Have you tried IV saline?
I don’t do much in the way of medications as i find they don’t generally agree with me but do use low dose clonazapam for adrenal surges and it helps my body cope with stress on the rare times I leave the house for Drs appointments. i use prednisone occasionally for histamine, allergy or asthma reactions and find it does boost my energy a bit. I have been working with a naturapath for the last year on hidden infections and have been taking Research Nutritional Transfer factors and Research Nutritionals Multi immune, had to start on micro dose and build up to full dose as it caused flare ups of symptoms but it has helped me a lot with reduction of recurring infections, decreased fatigue, less nervous system activation, reduced nausea etc. Have just started treating SIBO with Mediherb Bacto Cand GI and am feeling less GI symptoms and increase in energy. i do a bunch of other vitamins and minerals and L Lysine for viral stuff. Working with this naturapath has improved my quality of life. Still housebound but less reactivity and sensitivity in my body. I find the B1 interesting as I was on that when really ill several years ago, think it helped but so much was happening in my body that needed help. I have been thinking of getting back on it as I know it does help with converting food into energy and my body has not been absorbing nutrition properly for years. I think it is fairly common that medications give us such mixed results with this illness.
Hi Lisa. I’m with you. I don’t like taking meds and I usually have bad reactions but I gotta do something so I have been taking risks lately.
Hey, I have moderate CFSME, with various stomach conditions, colitis, Abdomino phrennic dyssenergia, luckily my immune system was so low( Who the hell knows why) I was approved for IVIG under insurance as having “cvid”. It’s been my 6th month and I continue once a month for a year. Since I have started I have improved (slightlyyyyyy), but I can’t realy say that it was the reason. I’m also on Prozac, lots of it, Ativan, thyroid medicine cytomel and synthroid(so I have slight slight thyroid numbers that were off and my Endo wanted to try these-considering I also lost my period 4 years ago, again with no explanation). (Lots of supplements too). I also take modafinil few days a week which I hate taking but it gives me a false energy boost.
Since IVIG, since the thyroid meds, my period has returned. I also still get saline with the IVIg. I have been told it needs TIME to have my body get better Ofcourse, and I go by the hope that my IVIG nurse gives me, he watches people’s lives dramatically improve from IVIg. None of them have CFSME, they’ve had various things , but I just use his hope 🙂 sending you love my friend.
Hi. Interesting. I know several people who use IVIG and it’s really helped. I’ve yet to try for a few reasons. My levels are fine but maybe I’ll try at some point anyway. Thanks for the love!
I had a rare side effect to one of the medications that you are considering.
I am still waiting for my Stanford appt in a few months., so I’m trying only natural things right now….including Selenium, L-Lysine, Zinc, Vitamin B-12, Ester-C, Vitamin D, One A Day all natural full w/ greens and vitamins, and like 2 other things as of now and I take these 2x per day…along with neurofeedback to treat the anxiety and that gets worse the more tired and fatigued I get. and a TON of sleep. Nerurofeedback is somewhat stimulating and I am able to stay awake a little longer.
I am curious about Valtrex and whatever else Stanford may say.
Hi Michelle. So glad you’re going to Stanford. I hope they help. It’s a little crazy over there but well worth it.
I keep a list of things people are impressed with. My body won’t tolerate seemingly anything but B12, everything else makes me much sicker, like even vitamin C. There’s a war going on inside of me and I haven’t a clue which side I’m even supposed to be on at this point. I’m copying and pasting this list so my apologies if it’s redundant of your list. I keep it in hopes that someday I’ll be well enough to try any or all of them.
• Valcyte, valtrex, mestinon (sp?) “make me more functional”
• Bifido Bacterium. “I have been taking BB536, which is a stable version”
• Coenzyme Q10 (essential for energy production) and D- ribose.
• 500 to 1000 milligrams of acetyl l-carnitine
Hoping whatever is next for you brings you the best of the best.
Thanks! LDN and coq10 seem to be very common among us.
I meant to add the below list, but forgot 🙃 I’ve been prescribed the following, but have had bad reactions to all, but as we all know that doesn’t mean anyone else will: butrans patch, cyclobenzaprine, Cymbalta/duloxetine, Fentanyl, Feosol, fludrocortisone, Folic Acid, gabapentin, hydroxychloroquine, meloxicam, midodrine, Naproxen, Savella, and tramadol. Hoping the Spring, when our bodies don’t have to fight so hard to stay warm, brings us all a bit of relief.
Definitely I’d suggest Coenzime Q10 in the redox form (ubiquiniol). I’m very surprised that you didn’t mention Provigil/ Modafinil which is used in a subgroup of ME/CFS patients and also present as symptomatic therapy for fatigue in the Italian AGENAS guidelines for ME/CFS ( http://www.agenas.it/sindrome-da-fatica-cronica-lo-studio-di-agenas , in italian) and in other neurological disease (as MS) for fatigue. Also, I’d suggest to check https://www.diseasemaps.org/ and put yourself there . in that geo database, people put their illness / conditions and also what helped them. Hope you’ll appreciate this comment. A hug from Italy !
Hey! Thanks I will research provigil. Sounds interesting. I’m already on disease maps but thanks for the reminder!
I have: ME/CFS, POTS, & migraines. I was initially homebound with the ME/CFS, but have recovered quite a bit. I’d say I’m currently a moderate case, but only because I’ve been lucky with some medications and because I’m very diligent about 24/7 heart rate monitoring.
IV saline – helpful during a crash, especially if I don’t have to go to the ER to get it. I can get them at home from a local company, but they don’t take insurance. I also drink ~100oz of water a day and sometimes need electrolyte supplements as well.
fludrocortisone – helpful. it raises my blood pressure. at too high a dose, it increases the frequency of my migraines and can raise my blood pressure too much.
ivabradine – incredibly helpful. It lowers my heart rate significantly without making me groggy, or messing with my blood pressure. My insurance will not cover it.
metoprolol – somewhat helpful. It lowered my heart rate somewhat, but also lowered my blood pressure and weakened my heart overall. I’m glad to be off it, but would take it again if I couldn’t afford the ivabradine.
Vitamin D – possibly helpful? I don’t notice a difference between when my levels are low and when they’re fine, but I still supplement
Vitamin B12 – slightly helpful. I notice I’m a little more sluggish when my levels are low and get a slight boost after taking my monthly shot sometimes.
naproxen – helpful. This helps quite a bit with my brain fog, as well as some inflammation-related pain. It causes constipation and some other digestive symptoms, so I also take an acid-controller with it. I take an OTC dose now, but it was initially prescribed at a higher dose for an acute injury. The difference in the brain fog was a very surprising side effect.
sumatriptan – treats my migraines, and a certain kind of pain. It temporarily makes my POTS worse, so I try to avoid taking it when I can.
Hey Rachel! Thanks for the list. I’m going to look into Naproxen. Need something for the pain.
Naproxen helps me, I try not to take it too much. I have RX strength. On a rare occasion I’ll take 2 Tylenol. I just don’t want too much of something to cause another issue.
Has anyone tried Ringer’s lactate infusions? I just saw a study that saline can damage kidneys over time.
Daily multivitamin vitamin, B12, vitamin D 50,000mg 1× every week, metropolol, plaqunell, topirimate, colchisin.
Those are just a few. I did get put on midodrine, I thought I was going to DIE. My blood pressure went way to high. Metoprolol has helped so much!!!
Topirimate does more than one thing. I get migraines and it helps with those but it also helps with pain in general. Colchisin is for chest pain for cosdrcondritis. It’s seems to keep it from getting worse. I am on a high protein diet, no sugar, no bread, white or processed. It doesn’t make a difference.
Tried Cymbalta, gained weight, didn’t helped with pain. Same with lyrica.
Tramadol is reserved for my awful days.
I’m not sure what you used Valtrex for, but it has always worked beautifully for me for genital herpes outbreaks. My main meds are for a mental illness. I have no other definitive diagnoses I take meds for other than hypothyroidism, and my Synthroid works perfectly for that.
I don’t know if you wanted me to comment on my bipolar disorder meds. That would take me too long. I’ve been on at least 20 over the years. Several with negative effects, some good ones. Also, propanolol helps/helped well with some side effects (tremor, tachycardia), and not at all with akathisia.
Imunovir antiviral helps me get rid of persistent flu-like symptoms, I took L Acetyl Carnitine daily injections to help the brain fog/vertigo and it also gave more energy to my legs but I had to stop because of strong headaches and palpitations as side effect. Now I am taking American Ginseng. Also vitamin B supplements, Magnesium and many herbs. It is actually a mixed supplement anti fatigue developed by the specialist I am going to. I am also seeing chinese medicine doctor to help hormones regulation. I am starting to believe more and more that hormones play a very big role on this disease! The biggest game changer so far has been ozone therapy autohemotherapy. I thought I was going to stop walking completely but the treatment is helping me. I need a wheelchair just for long walks like in airports but I manage to walk short distances. Hopefully with time this treatment will help clear the blood from infections. I basically use mostly natural or alternative medicine. I think using too many prescription when your immune system is weak can be more damaging on the long run. Also I am trying to avoid to read all the support groups now.I know a lot of people heal and that when I read too much tragic stories I immediately feel worse. Reading Dan Neuffer book now I don’t know how legit it is but he makes interesting points. Love your blog!
Hi Serena. Oh wow you’ve tried a lot of stuff. Ozone is on my list. Where do you try it? American Ginseng is something I tried a long time ago so thanks for the reminder I should probably try it again. Thanks for reading my blog!
Hi! I live in the Middle East and I am doing ozone therapy in a German Clinic. I do it once a week from a few months I used to do it twice a week but it is quite expensive. The specialist said it could take up to a year to see a real benefit…. I think with this disease it is a matter of accepting and be patient?!? But then again every disease is the same I guess. We need to stay positive.
Oh wow, do they offer stem cell treatments too?
I have fibromyalgia. I’ve been on LDN since February (4mg) and I can cautiously say that it helps. Weed helps the pain, but it knocks me out and it’s not legal in my state. Wish I could donate, but I’ve been too tired to work much lately.
Hey thanks, good to know!
Hi Jamison. I’ve been sick since 2009 and I’ve just stumbled across your blog. I came to this page because I feel like I have tried everything, and what what? Seems I haven’t!
I’ve tried Plaquenil, Sulfasalazize, Tramadol, Arcoxia, Sodium Diclofenac, Cymbalta (made me worse), Lyrica (made me worse), Celebrex (made me worse), Ketoprofen, Codeine, all sorts of corticosteroids in tablet and by injection, plus all the GI meds I take for my stomach and my supplements.
I’ve weaned myself down to Sulfasalazine, Tramadol, Arcoxia and sleeping meds. My doctor just gave up on me last week and I’m floating again without any guidance. I’m looking for a specialist to work with me privately as I’ve run out of all options through public health care.
My supplement list is pretty long. I’ve found D-Ribose and CoQ10 helpful, 5-HTP, as well vitamins B and D, and fish oil. I try to rotate them in and out to stay steady. I’m not really steady. I’m all over the place, up and down, bed to feet for no more than 2,000 steps per day if I can do it. Mostly bed and very reliant on a wheelchair now.
I’m looking into Ozone treatments now and have explored alternative treatments such as acupuncture (NO), acupressure (yes), scraping (NO NO NO), cupping (DEFINITELY NOT), diet resets (mostly keto now), juicing, bloodletting (NEVER AGAIN), sensory deprivation tanks, TCM brewed especially for me for a doctor who claims to have cured cancer patients (NOPE), Reiki, CBD and Kratom. Pretty sure I’m missing things here, but this is what I could think of today through the brain fog and within my window of opportunity before it goes dark again.
Anyways, I just wanted to say thank you for posting your story and for this list. I feel a little better today after stumbling over your site. Hope today is an ok day for you.
Hi there! Oh wow. So you’ve tried a lot of stuff too. I haven’t tried any on your list, except the supplements and alternative treatments, those are always an adventure. Thanks for sharing your experiences and for reading!
Hi Jamison, I too have ME/CFS and have been amazed at the progress you have made. Big congratulations!!!
You’ve mentioned IV saline, have you written about this anywhere? Would love to know…which dr. prescribed it/ do you have to return to see that dr. frequently re: the line/ do you take saline every day?
I previously took fludrocortisone, for about a year and a half. It, along with mestinon, and ldn, have made the biggest differences for me. I had to stop taking florinef after a series of blood patches successfully sealed my cerebrospinal fluid leaks, and I am now waiting for the rebound intracranial hypertension to settle back down.
Upshot, I can’t take florinef, or extra dietary sodium, and have worsened significantly (frighteningly). I’m trying to figure out how I can increase my blood volume again without driving up my already high cerebrospinal fluid pressure.
Would love to hear about your experiences with saline. Best wishes for continued progress!
Hi! Saline has definitely been helpful but I’ve cut back to 3x a week. I do it through a midline IV. But I think Valcyte has probably been the most helpful though. Or maybe it’s a combination of the two and hydrocortisone. It’s so hard to tell what helps.
Hey! Thanks so much for your reply. Valtrex has helped me a lot, too, I think? It is really hard to tell what helps. Personally, it seems like I sometimes can’t see benefit until another, non ME doctor takes me off a supplement or drug and I slide backwards! Best wishes for your treatment journey.
I follow your story for a short time now but have been touched by it. I want to suggest something that I found worked for me (RA,Lime, severe tinnitus patient).I wont tell you anything about curing your disease as I believe there are no checked cures for some diseases – ones that are not understood). What I believe is possible is to lower the symptoms – find your ‘painkiller’ tablet to be able to function more or less properly with the disease. What I would like to propose Is you to try some norephinephrine and/or dopamine stimulants. Thats right – while looking for a cure for the disease, try to trick your body to feel better with the disease. Just like we all take simple paracetamol for headache. Paracetamol wont work for the cause, but it will trick our bodies not to feel bad.
So I would start with plain old venlafaxine – its a serotonin BUT (most importantly) norephinephrine reuptake inhibitor which in higher doses also works on dopamine receptors (. I would plan my ‘trial’ for minimum 2 months. Starting from 75mg/day I would gradually (throughout the month or so) increase my dosage up to 375 mg (thats where the dopamine reuptake kicks in).
The second med if venlafaxine wouldn’t give any progress I would try is Bupropion. Its pure norephinephrine and dopamine one. Starting from 150mg up to 300mg. Both of these meds are not SSRI’s (which I’ve tested to great extent).
So to sum up. They work differently although also touching serotonin receptors. At the start you can feel worse. But I would give it a try. I’m also not trying to convince you that’s all in your head (suggesting antidepressants may suggest that). I was also told by some doctors this kind of shits. But I figured that while coping with the illness, looking for a cure, we also can increase our quality of life, fool our bodies that we are more healthy than we are – to fell better. Stimulating our brains, making it less susceptible to our suffering is also a way of making us better. Please feel free to ask any questions.
P.S. In your post you suggested you are taking steroids like Hydrocortisone for a longterm. I would suggest you stop doing that immediately. It really messes our methabolism and making susceptible to infections especially fungal ones (and its a side effect that stays for a long time). It also have many more side effects….