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


advertisement
Reply
 
Thread Tools Display Modes
Old 05-27-2017, 10:15 AM #1
anon6618
Guest
 
Posts: n/a
anon6618
Guest
 
Posts: n/a
Default Th1 and th2 (immune system stuff)

Hi all,

Since I am still struggling to find something that makes me go "wow" (still bedbound way too much), I've talked with many different people; people with MG, doctors, and hocus pocus stuff.

Anyway, someone offered me a substance but I want to read more about it before I try.

So that's how I came accross "th1 and th2", because the stuff shifts the immune response from Th1 to Th2 dominance. I m trying very hard to find out what this means for achr+ MG, but can't seem to understand it.

Does anyone have a clue as to shifting from Th1 to Th2 is a good thing in MG?

https://www.researchgate.net/profile...autoimmune.pdf
  Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (05-27-2017)

advertisement
Old 05-27-2017, 05:26 PM #2
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
Heart

I hate that you are doing so poorly! Can you remind me which drugs you're on?

The research into helper cells and how they operate in the immune system has come a long way. But they are no where near (so far) an understanding of how to help the various forms of MG. What you are discussing is "experimental MG," which has been studied by Dr. Blalock and other researchers for almost two decades with no firm results.

Th1/Th2 cells. - PubMed - NCBI

Th1 and Th2 responses: what are they? | The BMJ

You need help now. Have you seen an immunologist? I would highly recommend that. There has to be something else going on with your body that is making MG worse.

Have you had your immunoglobulins tested (i.e., IgG, IgA, IgM, IgE)?

Have you ever tried Rituximab or Low Dose Naltrexone?

You really need new eyes on your situation. And a MG expert from Mayo (such as Dr. Harper in MN). You could always email Dr. Harper and ask for his opinion. I believe his email is on their website.

Yes, the research they are doing is promising. And I applaud you for thinking of something, anything that might be making you worse! But you need more doctoring. Your quality of life doesn't sound too great. And with your MG not responding to treatments well enough, you could be in grave trouble. Not cool.

Do you have a doctor where you live who can set you up with an immunologist for evaluation? Try to find one in private practice or at a university, since HMO ones tend to deal only with allergies! They could then refer you to someone to help. You need to know how your immune system is working first (too much CD4 or CD8 or whatever). Then they can try to work out a treatment for you.

Immune profiles also change over time. So even if you had one before, it is worth looking at again. So is B12, if you haven't been checked recently! Without B12, the body doesn't make enough acetylcholine.

What else can I/we do to help?


Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anon6618 (05-28-2017)
Old 05-28-2017, 01:27 AM #3
anon6618
Guest
 
Posts: n/a
anon6618
Guest
 
Posts: n/a
Default

Wow Annie, thank you so much for your answer!

Tbh, a little while ago I almost gave up.
But luckily I still have hope, so I'll keep fighting. I still believe I'll get a good working treatment soon. To just move, walk, do, breath effortlessly, I really just want to be able to stand straight and feel normal. Like a human being.


I have seen an Immunologist (and so many specialists have seen my case), as I have multiple illnesses.
Though of all the things I have; MG is my worst one, because it's mostly my trunk, eating and breathing muscles, so that leaves me bedbound this much. Don't worry, I am stable, and I have been worse, but I still can't do as much as I would like. My QoL is indeed not quite as good as I would like.

It's is said to be some kind of interaction between multiple diseases, and I believe my longterm high dose prednisone isn't helping much. I'm on prednisone, weekly ivig and cellcept (immune system stuff, I use many more).

I have never tried Rituximab, but I wrote it down to talk about with my neurologist when I see her. I also want to talk about cyclosporine A and cyclophosohamide (though the 3 scare the heck outta me )
LDN isn't an option I thought, because I still use high dose prednisone.

I wanted to know more about Th1 and Th2 because I want to try CBD (Cannabidiol = a non psychoactive compound in cannabis, legal in many places). I have read a lot about it, and as far as I understand it can be immunomodulating, and it is said to shift the immune response from Th1 to Th2. Which is good in diseases like auto immune R.A. or Diabetes 1, since that's caused by something in Th1.
But, I can't seem to find information about the role of Th1 or Th2 in MG.

My immune system is tested, but I have some false positives / negatives now because of my frequent high dose IvIg.

Thank you so much, your message is enough help, just you thinking along warms my heart!!


Last edited by anon6618; 05-28-2017 at 01:51 AM.
  Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (05-28-2017)
Old 05-28-2017, 05:46 AM #4
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

Different clones of both Th1 and Th2 cells are specific for different targets

Clones of Th1 and Th2 cells specific for acetylcholine receptors and probably MuSK are relevant in the case of MG.

Generally, activated Th1 cells produce proteins called cytokines (for example, IL-2) which have inflammatory effects. They also help in the production of antibody subclasses which are good at activating the complement system. The complement system destroys cells which a specific antibody has bound to (for example, cells expressing the acetylcholine receptor and/or MusK in the case of MG).

Activated Th2 cells produce cytokines (for example, IL-4) which are anti-inflammatory. IL-4 also stimulates differentiation of Th3 cells, which secrete TGF-β and are involved in immunosuppressive mechanisms. Activated Th2 cells also help in the production of antibody subclasses which are poor at activating the complement system.

This is very complicated but these three free-access reviews might help.

Myasthenia gravis: past, present, and future

https://www.hindawi.com/journals/ad/2012/874680/

Changes in inflammatory cytokine networks in myasthenia gravis : Scientific Reports
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (05-28-2017), anon6618 (05-28-2017)
Old 05-28-2017, 07:37 AM #5
anon6618
Guest
 
Posts: n/a
anon6618
Guest
 
Posts: n/a
Default

Thank you Kiwi!

It is indeed quite something. I'll try to read it later because I don't really understand it at the moment.
Would you, considering the information above, think it can be helpful in anti -achr mg to shift the immuno response from th1 to th2?
So "more" th2 and "less" th1?
  Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (05-28-2017)
Old 05-28-2017, 09:47 AM #6
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

Ravenclaw, I think that shifting the balance of Th1 and Th2 cells is favour of more Th2 cells would probably help in MG.

I don't know if this has been tried but one potential risk of it is that Th1 cells have important roles in defending against bacterial and viral infections - relatively small numbers of Th1 cells could mean that people are unusually susceptible to these infections.
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (05-28-2017), anon6618 (05-28-2017)
Old 05-28-2017, 11:01 AM #7
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
Heart

You're not alone! I think that's the hardest part about MG. Other people often tend not to understand how hard MG is.

This article came out last year, chronicling the effects of marijuana on some people. If someone doesn't have MG, the effects would seem to be "mysterious" when they're really not!

Mysterious illness tied to marijuana use on the rise in states with legal weed - CBS News

What marijuana or the derivatives do is increase acetylcholine. Pot has the same effect as Mestinon. That's why it can be dangerous to MGers. Read that article and think about the increase in symptoms people are having! Typical Mestinon overdose symptoms. And taking a HOT shower helps! Heat increases acetylcholinesterase, which decreases acetylcholine! I even emailed the doctor in this case, but never heard back. I think they like sensationalism (and the money) more than they want to help people!! Sad.

I think looking at your diet may help as well, but you need an expert. I mean, in terms of eating foods high in nutrition and not eating foods that may exacerbate MG (nightshades, caffeine, etc.).

Doing any kind of modulating of the immune system without a specific target, a defined protocol, or proven results could be disastrous for you. Understanding the role of cytokines and other immune "players" in a disease is great, but that alone won't help you become better.

I'm sorry that you haven't had a thorough accounting of your body and systems that would benefit you. Have you written down all of your drugs, your conditions, related symptoms, symptoms that don't seem to fit within the conditions, time of day symptoms are worse, degree of impact on your body, and anything else that is going on? I think you need to be your best reporter of all of the details of your health. That might help a doctor in the future figure out what is going on to prevent MG from improving.

If an immunologist isn't doing the right tests, they can miss something. They aren't all created equally. That's why a new set of eyes may help.

Don't ever give up! I have needed help in that regard and turn to people far wiser than I will ever be, such as Matt Kahn. Or watching something that makes me laugh. Or meditating to stay in a state of love energy. There's always something or someone that can help us! But, unfortunately, we MGers need that help in the form of smart doctors as well!

I wish there were doctors out there (there probably are) who would love a challenge such as yours, who would dig into that with all of their resources, brain power, and heart, and who could further the field because of that. Wouldn't that be great?


Annie

Last edited by AnnieB3; 05-28-2017 at 11:43 AM.
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anon6618 (05-28-2017)
Old 05-28-2017, 12:30 PM #8
anon6618
Guest
 
Posts: n/a
anon6618
Guest
 
Posts: n/a
Default

Quote:
Originally Posted by kiwi33 View Post
Ravenclaw, I think that shifting the balance of Th1 and Th2 cells is favour of more Th2 cells would probably help in MG.

I don't know if this has been tried but one potential risk of it is that Th1 cells have important roles in defending against bacterial and viral infections - relatively small numbers of Th1 cells could mean that people are unusually susceptible to these infections.
Thanks, yeah that's probably true but most of my meds have risk of (scary) infections as side effect. I get a lot of ivig however, so i guess that helps with that.
  Reply With QuoteReply With Quote
Old 05-28-2017, 12:37 PM #9
anon6618
Guest
 
Posts: n/a
anon6618
Guest
 
Posts: n/a
Default

Thanks Annie!

I only try the CBD compound, so it's different from marijuana. I am starting really reallh low, (like the dosage for healthy people is 15 drops, for sick people over 40 drops a day. i take 1/2 drop )
I know this isn't the most scientific way to go, but I don't think it's as disastrous as going on like this much longer. We noticed some of my muscles are losing health, I have thin arms and legs. Not a direct MG symptom of course, but my years of too little movement and too much ored has already caused this.


I have written it down, I keep very good track of everything. I could really use a doc like you mentioned yeah. I have some that fight for me though, I'm thankful for that.
  Reply With QuoteReply With Quote
Old 05-28-2017, 01:11 PM #10
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
Help

Look for signs of Cushing's disease. Maybe see an endo for evaluation.
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anon6618 (05-28-2017)
Reply

Tags
hard, immune, stuff, th1, th2

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
Melatonin and the immune system janieg Peripheral Neuropathy 0 09-10-2015 06:31 PM
Immune system Mimsies Traumatic Brain Injury and Post Concussion Syndrome 3 11-20-2012 03:02 PM
Immune system down tamisue Traumatic Brain Injury and Post Concussion Syndrome 12 12-29-2011 09:53 AM
It's the IMMUNE SYSTEM, stupid caldeerster Parkinson's Disease 4 08-17-2010 08:37 PM
Boosting the Immune System carolyn_lsc Vitamins, Nutrients, Herbs and Supplements 4 07-17-2007 03:29 PM


All times are GMT -5. The time now is 04:47 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.