- This topic has 9 replies, 10 voices, and was last updated 1 month, 3 weeks ago by Philip Callas.
June 23, 2022 at 2:28 pm #19397N MurugaParticipant
Recently diagnosed with ocular MG and was told there is no medicine to halt the progress of the disease. Do probiotics help in lessening the severity and symptoms of the disease? If yes, what are those probiotics?
June 23, 2022 at 2:47 pm #19398Brad HerndonParticipant
Hi N Muruga,
That is absolutely not true. If you have the resources, you need to connect with a Neurologist, preferably, an MG specialist, if possible. There are multiple treatment approaches. Some won’t work for everyone but many do. It is a bit of trial and error, but so important to connect with good clinicians to help guide the journey.
Best of luck!
June 24, 2022 at 10:36 pm #19407Lisa BlutmanParticipant
Hi: when diagnosed with occular, my neurologist immediatly put me on mestinon. I ended up with general layer that is totally undercontrol when adding celcept. You need to see a good neurologist who will work with you.
June 25, 2022 at 12:33 am #19413Barbara E.Participant
You mentioned probiotics, which may help depending on your GI issues. Yet keep in mind… There are many treatment options for MG, but no cure yet. Treatmwnts must be customized for each of us because we all respond differently to MG (called the “snowflake disease”) and the treatments. The goal is to lessen and control your symptoms as much as possible and adapt as you may need. With luck, you might even go into remission, which I did for 13 years.
For the best results, you must work with a great neurologist or neuroimmunologist, who specializes in neuromuscular disorders, like MG. Also, learn as much as you can to help understand and advocate for yourself.
Start by checking online information available from the Myasthenia Gravis Foundation of America (MGFA), other medical websites (Johns Hopkins, Mayo Clinic, etc.) and even YouTube. Knowledge is power when added to your determination to fight for your best quality of life! Best of luck!!
June 25, 2022 at 1:24 am #19415RonaldParticipant
I have recently started with water Kefir if you don’t know it you can google it
this is very easy and simply to maintain the production
i also eat plain natural unsweetened yogurt and I find that this helps to replace and maintain the healthy stomach bacteria which in my case seems to be lessened due to the medication
my other daily supplements are vit D Ubiquinol 200mg and Astaxanthan
I am not in remission I do take mestinon 60 mg as required and as fewer times as possible myfortic 500mg twice a day and 5 mg preg
i play tennis 4 times a week for 4 hours plus and this makes a big improvement to my day
cold swim every morning including winter and infra saunas at least every week
I do get IVIG every 4 weeks now being extended to 6 weeks to try to wean me off it
hope this helps in some small way
all the best Ron
July 4, 2022 at 9:50 am #19482Mary AnnParticipant
The symptom that caught the MG for me was the ocular connection with droooping eyelids…. but when the doctor started me on Prednisone and the Pyri Rx, my eye lid went back up from geing completely closed down within 48 hurs. The double vision is also less and now almost gone completely. The “pyri” caused tummy upsets, so we have since stopped that and I’m only on prednisone now at 40 mg a day and after 2 weeks, the neurologist is going to start me on less….. See a neurologist. Be warned on the perscriptions that interact… see the MG page – for that is what caused my ‘FLARE UP”….
January 23, 2023 at 1:23 am #20674MikeParticipant
Because my Neurologist wants me to take Bactrim (an antibiotic) when my daily prednisone dose is 20 mg or greater, I’ve been on it (Bactrim) for over 7 months now. I hope to be on less than 20 mg prednisone starting in about six weeks if the weaning I’m currently undergoing is successful.
Does anyone have suggestions on how to restore the gut microbiome once a person is off antibiotics? I’m familiar with (but have never used) pro/pre-biotics. What meds or OTC preparations have you found to be successful? Did you happen to go to a nutritionist for advice? Thanks for any feedback.
January 27, 2023 at 1:19 am #20682LiseParticipant
This is my treatment plan as of now mestinon 6o mg 3 timer a day I take cellcept 2000 mg a day prednisone 20 mg a day and also go for IVIG treatment on a somewhat frequent basis as of yet 5 day infusion treatments I’ve had 2 since October. Just been given new medication for migraines as the IVIG brings on migraines again hoping it’s not the MG. Magnesium and potassium is very low also something new? The medication does help my eye it is almost normal again but it has hit my muscles and nerves in my face at time and weakness in my muscles, hopefully this last treatment 4days ago will have some progress in slowing things down
January 27, 2023 at 8:39 pm #20685Robert DevineParticipant
I cannot help with your probiotic question but it makes sense with the gut brain connection try to google it. I also have ocular and was told by my neurologist the same thing he only has me on mestinon which does help with symptoms but not the disease progression. After doing my own research it became clear that people ocular MG has a lesser progression to generalized when they took mestinon for symptoms and an immune suppressant drug notably prednisone which works to control the autoimmune response. There are other suppressants that can be used also but the key is to add them to your regimen. You MUST locate an experienced neurologist by searching and asking for recommendations on forums like this for your area. Many neurologists are not experts with mg but fail to tell you this. I am now on the third one – tried 2 at Cleveland clinic – you have to have a specific name to ask for or the large practices just give you to whoever is the least busy doctor and they all say they are equal and experienced with mg but this is not true. There are many factors that influence your chances of the condition going from ocular to generalized ie age at onset the older not as good, positive emg test, positive acetacholine antibody test but try to be proactive I’m going for a third opinion next week as I had to talk my current neurologist into giving prednisone.
January 27, 2023 at 11:05 pm #20689Philip CallasParticipant
Started off with ocular and graduated to gmg, on mestinon which worked very well for the ocular issue, am still on low dose of mestinon along with IVIG and imuran, doing ok but fatigue and weakness a huge issue with me. Good luck and be well
January 30, 2023 at 2:02 pm #20687S. R. PrasilParticipant
Regardless of whether probiotics wind up as part of our standard protocol or not, there are so many studies of how helpful they are to us even when everything seems rather ‘normal’. The link I attached shows many studies specifically on MG and probiotics and/or autoimmune neuro issues and probiotics. So—I have added probiotics to my regime.
February 2, 2023 at 2:29 pm #20698FrankParticipant
As others have said there are scholarly articles that say that autoimmune conditions, of which MG is one, affect the gut biome. They don’t say that gut biome can cause MG, though some believe that.
So, probiotics cannot hurt and can help keep your stomach healthy with the various medications and/or supplements that are taken. I get mine on amazon and am very happy with them. I use one that is for women because the main difference between the standard and the one for women is additions to help prevent urinary tract infections (which I have had in the past and have found very unpleasant). Dr. Formulated Raw Probiotics for Women 100 Billion CFUs with Prebiotics, Digestive Enzymes, Approved Women’s Probiotic for Adults, Shelf Stable Probiotic Supplement Capsules The labels calls for two per day, but I only use one per day and they last two months for about $25.
My neurologist was pleased that I take them, so I keep on taking them. Good luck with your journey. At 71, I have spent a lot of time using alternative remedies, supplements, and other modalities with my traditional medicine route and have found it very helpful. Please, please don’t fall for the nay sayers that claim that alternative remedies/medicine is quackery or don’t work. . . the science and experience just don’t support that position.
Take care, Frank
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