Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 06-24-2018, 05:45 PM #1
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
Default Supplements?

Got sent to a new doctor, a physiatrist, who told me to start a bunch of supplements. Did, about three weeks ago. Have noticed more weakness and fatigue in my arms since then. Just a coincidence, or could they be interfering with the pyridostigmine?

I am on only pyridostigmine for the MG (which no will, STILL, officially diagnose me with despite muscle, breathing, and eye problems, and very positive response to pyridostigmine, because I don't have a positive blood test yet.)

New doc had me start: probiotics, krill oil, turmeric capsules, collagen powder, n-glutamine, and vitamin D (which still kills my stomach, so I mostly don't take it, long history of this, no one can explain, nor find a way around it; makes no sense, but it happens.)

Could any of that be affecting the way the pyridostigmine works? Because I need it sooner than before, and it's not working as well. Or am I just so lucky that the disease no one will admit I have is getting worse?
winic1 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (06-26-2018)

advertisement
Old 06-26-2018, 08:15 AM #2
Texasron Texasron is offline
Junior Member
 
Join Date: Jun 2017
Location: Austin TX
Posts: 9
5 yr Member
Texasron Texasron is offline
Junior Member
 
Join Date: Jun 2017
Location: Austin TX
Posts: 9
5 yr Member
Smile

Quote:
Originally Posted by winic1 View Post
Got sent to a new doctor, a physiatrist, who told me to start a bunch of supplements. Did, about three weeks ago. Have noticed more weakness and fatigue in my arms since then. Just a coincidence, or could they be interfering with the pyridostigmine?

I am on only pyridostigmine for the MG (which no will, STILL, officially diagnose me with despite muscle, breathing, and eye problems, and very positive response to pyridostigmine, because I don't have a positive blood test yet.)

New doc had me start: probiotics, krill oil, turmeric capsules, collagen powder, n-glutamine, and vitamin D (which still kills my stomach, so I mostly don't take it, long history of this, no one can explain, nor find a way around it; makes no sense, but it happens.)

Could any of that be affecting the way the pyridostigmine works? Because I need it sooner than before, and it's not working as well. Or am I just so lucky that the disease no one will admit I have is getting worse?
I had terrible gastric problems when I first started on Mestinon. A nutritionist recommended that I take a high quality pro biotic, Betaine HCL & Pepsin , Enteromend (l-glutamine) and I do a collegen shake. I have no problems now!
Texasron is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (06-26-2018)
Old 06-26-2018, 03:51 PM #3
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
Default

Dear winic1,

I think you live in the northeast part of the United States, yes? If so, it is summer weather for you now. I wonder if part of the reason you are having more symptoms is because of the heat of summer. I know it affects me very much, and I have to rest more and do everything I can to keep myself cool. The Mestinon still helps me, but it just can't keep up with the effects of the heat.

I don't take all of the supplements that you do, but I've taken some of them, including the Vitamin D3. At least in my case, it did not affect the Mestinon, but maybe other people have had different experiences.

If the heat and humidity may be affecting you, do what you can to stay cool. If you do not have air conditioning at home, consider going to places which do have air conditioning when it is hot, like a library or senior center where you can sit and rest. Sometimes the senior centers in our area offer cooling centers when it is especially hot, so anybody can go there to escape the heat. I use frozen ice packs along my neck and back to help cool myself; they are really for sore muscles, but they help me stay cool. Remember to keep hydrated in the hot weather, too. I am sure other people probably have even more suggestions. I try to do any tasks early in the morning on hot days, before it gets even warmer. Then I can just rest and be quiet when I am weaker as the day progresses. If there are any optional things, like laundry, I just skip them and let them wait for another day when we have a big heat wave like we did this past weekend. Then I just focus on getting through it.

Sending good wishes your way,
Erin
ErinBear is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (06-26-2018)
Old 06-26-2018, 03:52 PM #4
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
Default

Quote:
Originally Posted by Texasron View Post
I had terrible gastric problems when I first started on Mestinon. A nutritionist recommended that I take a high quality pro biotic, Betaine HCL & Pepsin , Enteromend (l-glutamine) and I do a collegen shake. I have no problems now!
It bothered me too, until I read ALL the ingredients in it, the inert, fillers--they make the pill with LACTOSE. And I am lactose intolerant. Now I take about a quarter of a lactaid tablet with each pyridostigmine, and no more stomach cramps and no more massive gas attacks.

Really got to wonder what kind of idiot thought it was a good idea to pack a pill with something that causes many people to have gut problems.
winic1 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (06-26-2018)
Old 06-26-2018, 08:28 PM #5
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

When starting supplements, it's always a good idea to check each one against any drugs you are taking. Taking only one supplement at a time will help you to figure out which one is making you better—or worse!

Yeah, I don't know why Valeant puts dairy in the Mestinon tabs. That's one reason I need to do the syrup. I have an immune reaction to dairy.

There are different forms of vitamin D, such as vegi caps versus glycerin ones. What brands have you tried?

Probiotics are good, but look carefully for dairy in those as well. The UP4 brand doesn't have dairy.

Krill oil (or flax) is a good omega, as are walnuts or olive oil. Tumeric has blood thinning properties. If you are on any NSAIDS, or similar drugs, you may want to be cautious about using tumeric. Cinnamon is a good anti-inflammatory as well.

Collagen powder is not tightly regulated. A rice protein powder might be a better way to go. But that's up to you. We need lots of good protein. Collagen isn't a complete protein, and the sources might be iffy (beef, etc.). The collagen powders are also quite expensive. Amino acids can make someone sleepy once they hit the gut. Timing of those proteins is important as well.

N-glutamin isn't necessarily harmful. Please read up on all of these supplements. Also, once a body is used to a supplement, going off of them can be harder. They are not benign.

I appreciate complementary medicine. But that doesn't mean that everything out there is right for you. And there isn't enough evidence of how each supplement interacts with foods or drugs in the body!

Did the physiatrist give you reasons for each supplement? Knowing what the goal or end point is will help you decide what is best for you.

I hope you can figure out what supplements are right for you. But don't simply take something when a medical professional says to! Whether drugs or supplements, we need to know what we're putting into our bodies!


Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
Old 06-27-2018, 08:05 AM #6
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
Default

Quote:
Originally Posted by ErinBear View Post
Dear winic1,
I think you live in the northeast part of the United States, yes? If so, it is summer weather for you now. I wonder if part of the reason you are having more symptoms is because of the heat of summer. I know it affects me very much, and I have to rest more and do everything I can to keep myself cool. The Mestinon still helps me, but it just can't keep up with the effects of the heat.
@ErinBear, I have centrai AC. It is my best friend, and I am one of our electric company's best customers. Humidity over 60% with temp over 75 degrees, and I don't leave the house because I cannot breathe, it becomes a serious struggle. I hate being locked up inside a closed house, but I like breathing, so the breathing choice wins. Not a senior, and I had to give up driving several years ago because of my wonky eyes, and I'm in a small town with no public transportation, so home inside it is. That would be why I have so many pets (2 dogs, 2 cats, 2 degus, 11 budgies, 47 finches, a canary, and a goldfish).

@AnnieB3 I did run them through an interaction checker, and it came up with nothing. I always check new things, several times have caught stuff that the doc and pharmacist both missed, and being me, if there is any way something will cause problems, it will happen to me. I am one in a million, it seems. (If only it worked for the lottery.) But I often find real people are better sources of information than what the officials allow to be put out there.

Did start them one at a time. But only gradually noticed this happening, no sudden "gee, today I'm really bad" that would be easy to connect to something.

Did not check the probiotic for dairy, I don't think. Small print and I are mortal enemies at the moment. Will do that.

Collagen powder is for my joint pain. Every doctor I have been to in the last two years has said "you have rheumatoid arthritis" EXCEPT for the rheumatologists, because---you guessed it, I don't have a positive blood test. So they insist it has to be regular osteoarthritis, even tho x-rays are showing next to nothing (only age-appropriate) and absolutely nothing that would explain the pain and dysfunction level or that everything started hurting worse all at the same time, all over. I am tearing ligaments and "spraining" other joints simply by moving--not walking or lifting, some have gone when I simply moved my arm or ankle through the air. So, the collagen is not for protein, it's for the actual collagen-joint help thingy.

the krill oil is for the omega3's. We cook with olive oil. No nuts for me, I get migraines, even from raw, unroasted, unsalted nuts. I live in fear of the migraines, as they are of the "please let me die i can't take anymore" pain level while curled up in a little ball on the couch in a dark room until I cry myself to sleep from exhaustion, so migraine avoidance takes precedence over everything else. Everything.

Mostly take only a low-dose aspirin daily, as using other NSAIDS or Tylenol more than occasionally is a sure way to kick off rebound migraines, and as above, avoiding the headaches is top priority. No warning came up about low dose aspirin and turmeric. But will keep that in mind for future needs, there are times when it is necessary.

The glutamine is for all kinds of stuff. Since I am the poster child for side effects from man-made drugs, trying to help things from a less laboratory-synthesized angle.

The vitamin D--I have tried every form you can buy around here. Pills, capsules, gels, liquid (sorry kids, you can't go to college, I spent all the money on bottles of vitamin D)--my stomach objects by hurting. 3 am awake and holding my stomach kind of hurting. Don't know why. Makes no sense. Was getting away with irregular use of liquid vitD3, but when we went to the fancy health food store to get the rest, the owner suggested that a NATURAL source would sit better with me, so I let him talk me into another bottle of pills. Not good. Hubby's gonna get him some high quality (or just high cost) vitamin D. Which sucks because I am fair-skinned and sunburn quickly, AND one of the meds I am on is apparently making me even more sun-sensitive because I am burning even more quickly than ever in my life, and itching a little on all exposed areas after being out in the sun (this started before the supplements). None of my meds list sun-sensitivity as a known problem, but then, I am always so special. grrrr!
winic1 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (06-27-2018), azwild (06-27-2018)
Reply

Tags
explain, positive, pyridostigmine, start, supplements

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
New Need Help with Supplements shortwoman Peripheral Neuropathy 10 05-19-2015 12:02 PM
supplements IllPn Peripheral Neuropathy 3 03-14-2014 10:00 AM
Supplements? musicgirl757 Reflex Sympathetic Dystrophy (RSD and CRPS) 7 08-18-2012 01:28 PM
New Supplements SallyC Multiple Sclerosis 4 06-16-2011 09:31 PM
Supplements Sophie_ SCS & Pain Pumps 13 06-04-2011 08:43 PM


All times are GMT -5. The time now is 05:17 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.