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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Treatments Ive tried

Someone asked me what things Ive tried treatment wise so I thought I'd post my answer here. I know Im probably going to miss a lot of things Ive tried so will have to add them in later.

The treatment ive tried has just been in terms of helping symptoms.

B12 injections twice weekly have been the big thing which has helped me brain wise... and possibly long term in other ways too.

Denatured whey. i found that helpful, that feel of not feeling well went away, also felt more energy. The brand my CFS specialist recommends is Pharmafood Isowhey complete. Apparently some brands work better then others... Cheney and other CFS specialists suggest certain brands. (unfortuantely i developed a bowel intollerance to it so had to stop taking it)

Aggressive Rest Therapy (ART) (enforced resting/sleep even when you dont think you really need it or at very first signs of a CFS crash, I used to make myself stay in bed for several days)

Preemptive resting eg resting before you HAVE to rest and BEFORE activities rather than doing an activity and completely crashing then

Doing my own Juicing and juice fasts (found that some juice combinations did help my mind fog while other juices didnt).

Calicum 1200mg per day (CFS/ME gave me extreme PMS and the calcium helps that symptom)

Magnesium (dont seem to do much)

Vit D3 I was extremely deficient but daily supplementation dont seem to do much

Fish Oil (no noticable effect)

B6 (active form) and Folate (no noticeable effect) I have a methylation cycle issue and hence those

TMG (no noticable effect)

Increasing my fitness (didnt work). I either stayed the same or got sicker overall depending on how bad my CFS was at time.

Olive leaf extract in large doses (may of helped a little but Im not 100% sure)

Echinacea (did nothing)

Garlic (large doses) (did nothing except gave me bad breath :Retro tongue:

Large doses of good quality vitamin C with bioflavonoids (helped with some of my Allergy issues, got rid of the blocked nose I got for years every morning.. also got less sore throats)

Nystatin anti fungal (did nothing)

Antibacterials .. got rid of both a staph and strep infection i had but fixing those issues didnt help the CFS/ME at all

Good quality Probotics (didnt seem to do much)

Worked out foods I was reacting too (food intollerances) and stopped taking those. That did fix some extra symptoms I'd had at the time. Gave me less headaches, less tiredness, less mucus, less sore throats, less mind fog and less sore throats. Less gut issues.

Homeopathy (under this form of treatment for 2 mths) One treatment completely fixed up my constant drinking water and peeing issue.. (i used to have a constant thirst which never went away). I went from needing to go to loo 6-7 times a night, to only needing to go once during night if that. Thank God this treatment fixed that symptom.

Chiropractor Fixing a neck issue I didnt even know I had... helped get rid of intense headspins I was having and lessened heaps the amount of dizziness i get. Also helped my loosing balance issue some.

Reflexology (didnt help)

Weekly massages (just made me feel very relaxed and got the lots of knots i had out of my body, No help to the CFS/ME)

Meditation (at one point i was doing great at using that for pain control .. also used for relaxation. No help thou for the CFS/ME at curing any symptoms)

Deep breathing and visualization (helped me overcome CFS/ME panic attacks.. and I then stopped getting those).

Fibre supplements (helped the CFS/ME IBS)

CBT, DBT (both didnt help me in any way at all.. I was already experienced in relaxation techniques, positive thinking, visualisation etc as i used to run classes in these things). Ive seen 6 different psychologists, no symptom helped by my therapy.

Bettering my nutrition and eatting super healthy meals and avoiding junk food (didnt help me any).

Wheat grass juice.. grown myself and juiced (I mixed with pineapple to make it more easily drinkable). That did help me feel a bit better overall, brain and body.

Sports drinks... water/fluid loading. I will drink up to 28 cups per day (7 Litres) depending on my activities (helps ward off my POTS symptoms, dizziness, brain confusion, fatigue, blurry vision and unconciousness). I will drink 4 cups just before leaving my house to stop symptoms and carry water bottle with me at all times to keep drinking.
with the POTS i try to avoid getting too hot.

Pacing ... Sticking to planned day and planned activities suited to my current level of wellness. I schedule things and watch a clock when doing activities to not go over doing things more than a certain time. (this has allowed me to slowly improve. I hope to end up back in remission by doing this).

I only do those things i HAVE to do.. and keep a very simple lifestyle.

chemical avoidance (Has helped me a lot as now i dont get MCS as bad when i do have an exposure to something I used to react to)

hydrocortisone (natural cortisol) I have out of normal range results.. low cortisol... but using hydrocortisone didnt get rid of any of my CFS/ME symptoms.

progesterone cream (didnt help anything.. was hoping it would help the severe PMS)

testosterone implant (only got it put in today as my testosterone level came back as ZERO.. hoping it helps the severe PMS.. Low testosterone can cause many symptoms including fatigue. I suspect thou that my testosterone is swinging both high and low due to pituatory disfunction as last test was in high range of normal).

Antipsychotic (Quetiapine/Seroquel) Made CFS/ME worst as far more tired and mind foggy... sleeping far more unable to get out of bed even on low dose.. and then hungover. Made me not want to do a thing and took away all motivation to do anything.

Lamotrigine Made me far worst.

Antidepressents SSRI I tried Lovan (hoping it would help the PMS) and a few years later tried Citalopram (Celexa). Both these things made me iller.

Clonazepam/Rivotril/Klonopin Great for CFS/ME. I really liked this drug as it helped CFS/ME anxiety and made it easier to sleep. (i had to stop it due to severe paradoxial reaction thou).

Xanax (im not meant to be on this but do take at times for CFS/ME anxiety when something is really stressing me out). At times i find this helpful thou its contraindicated for me and I shouldnt be taking it.

Serotonin I found this helpful at times for my CFS/ME sleep reversal.


Sounds like a lot of money in that list, Taniaaust1. I think I feel better since I stopped trying different things & stuck to my basic tried & tested supplements. And since I'm on half the income now, I only buy the most basic, highly nutritious foods.

Life is so much easier when you don't have to make choices. And keeping a simple lifestyle, as you say, takes so much less energy.
One thing I switched to cause I got tired of mixing that undenatured whey drink was glutahione injectible. I mixed it with my B-12 and shot them both together into my butt. Only one needle stick that way.
I noticed Ive missed writing some of the side effects I got with the meds in the above post. So thought I'd cut and paste another post of mine here so I dont ever forget what happened when I tried them.

"i tend to get bad reactions from SSRI drugs even with extremely low doses.. i've tried Citalopram (Celexa).. makes me just sleep and non functional, couldnt even make myself a cup of tea on it) and Lovan (Fluoxetine.. prozac) had a different bad reaction (headaches? from it).

i like benzodiazepines eg Xanax (Alprazolam), i use only a quarter of the smallest dose and find that works, ive heard that isnt just used for anxiety in some patients but also as an antidepressant at times and Rivatril / Klonopin (Clonazepam) i found great (till i had a sudden suidial incident and OD on it).

i cant use sedating drugs thou for emotional liability or for sleep. I tried Seroquel (Quetiapine) and Olanzapine (zyprexa) and even at half of the very smallest dose, they have long lasting sleep affects making me loose the next day too. If i cut them back to where they dont go and knock me out for a very long time, they dont then work at all.

A stupid doctor who didnt believe in CFS once put me on Lamotrigine, very bad reaction there too (got hives rash) and went almost psychotic when put on Lamotrigine and Citalopram, i had a near psychotic eposide (strong urges to rip all my partners skin off back).

i've read that many of us with CFS cant tolerate SSRI drugs. "

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