Brain Fog is likely mast cell and glial inflammation.

[rebar]

Remy, what were you hoping for with the galantine and how has it helped. Also is the antihistamine for a mast cell issue?

I ordered the ibudilast, the cheeper Korean version, both the Ketas and the Pinatos were on back order, so now I wait.

 

[Remy]

Remy, what were you hoping for with the galantine and how has it helped. Also is the antihistamine for a mast cell issue?

I ordered the ibudilast, the cheeper Korean version, both the Ketas and the Pinatos were on back order, so now I wait.

Galantamine is an acetylcholinesterase inhibitor so I was hoping it would help keep my acetylcholine around longer and thus boost my parasympathetic activity.

Basically I was hoping for all that is described here: http://www.lostfalco.com/the-brain-fog-two-step/

Do tell...where do you get this Korean version? With Pinatos unreliable and Ketas so expensive, it would be good to have a backup source.

 

[rebar]

I assumed you bought yours at https://www.mimaki-family-japan.com, they have both. From what I read the Pinatos is Korean. Your commit about Pinatos, are you talking about efficacy, if so where did you see that comment.

I may have to order Ketas.



thanks

 

[Remy]

I assumed you bought yours at https://www.mimaki-family-japan.com, they have both. From what I read the Pinatos is Korean. Your commit about Pinatos, are you talking about efficacy, if so where did you see that comment.

I may have to order Ketas.



thanks

No, I just meant the supply of Pinatos is unreliable, not the efficacy. From what I've read, the efficacy is the same.

Yes, I did order from Mimaki. It's the only source I've found so far. I was hoping you'd found another!

 

[Who Me?]

@Remy @rebar I looked around alot over the weekend, google and forums and from what I saw Mimaki is the only source. They are currently backordered and they only let you order one box at a time.

The Pinatos is about $24 but the Ketos is $88. Shipping is $20. It's still cheaper I think to buy 2 boxes of the Pinatos, if you can place two separate orders a few days apart.

I'm going to keep hunting. There has to be another source.

 

[Lostfalco]

No, I just meant the supply of Pinatos is unreliable, not the efficacy. From what I've read, the efficacy is the same.

Yes, I did order from Mimaki. It's the only source I've found so far. I was hoping you'd found another!

Hey Remy, thanks for linking my post! I'm so glad it seems to be helping you so far.

I totally know what you mean about finding a new source for ibudilast. Mimaki is the only source I'm currently aware of but I've been talking to some vendors here in the US and they seem very interested. Hopefully, one of them should be stocking it soon. I'll keep you guys updated!

 

[Remy]

Hey Remy, thanks for linking my post! I'm so glad it seems to be helping you so far.

I totally know what you mean about finding a new source for ibudilast. Mimaki is the only source I'm currently aware of but I've been talking to some vendors here in the US and they seem very interested. Hopefully, one of them should be stocking it soon. I'll keep you guys updated!

So nice to see you here, @Lostfalco!

Thanks for writing such interesting information. Wouldn't it be fantastic if ibudilast was easier to source in the US?

I hope you will come back and keep us posted on ibudilast and other interesting things you find.

 

[cherubim]

I have been taking this combination myself for a couple of weeks now.

It's obviously early days, but I'm noticing a big difference. Fingers crossed.

I didn't even really think I had brain fog, to be honest, so this combination may actually help with numerous symptoms caused by over activation of these two systems.

I'm very encouraged.

Did your doctor put you on memantimine and idibulast? How are they working for you?

 

[cherubim]

I have been taking this combination myself for a couple of weeks now.

It's obviously early days, but I'm noticing a big difference. Fingers crossed.

I didn't even really think I had brain fog, to be honest, so this combination may actually help with numerous symptoms caused by over activation of these two systems.

I'm very encouraged.

Are you still on this? How did it work?

 

[Lostfalco]

So nice to see you here, @Lostfalco!

Thanks for writing such interesting information. Wouldn't it be fantastic if ibudilast was easier to source in the US?

I hope you will come back and keep us posted on ibudilast and other interesting things you find.

No problem, Remy.

Yeah, it would amazing to have a reliable source in the US. It's definitely going to happen it's just a matter of when.

I will be happy to come back and keep you updated on new findings.

 

[cherubim]

That's the opposite though..,it should get better!

I am having trouble reading things, so may post out of sequential order, but I ordered memantine. I am going to order ibuligast also for mast and glial cell activation. I had to order overseas because my doctor won't write the script.

I would like to give you one more medication that is benign - most doctors will prescribe it; mine did: Cromolyn Sodiu.

Here is a well-research article with diagrams if anyone would care to read it: http://www.academia.edu/15729041/Pathological_pain_and_the_neuroimmune_interface

 

[cherubim]

Cromolyn Sodium.

Thanks for the heads up 'Who me'.

 

[Who Me?]

@cherubim. Many of us are already on gastrocrom (see my post about cromolyn sodium) and have tried or know someone who has tried most of what you have taken.

Also many if us buy from overseas. It's not a big deal.

Here's a list

http://www.healthrising.org/forums/resources/overseas-pharmacies.323/

 

[cherubim]

I am not up to speed - so most are on cromolyn. Valcyte didn't help you?? That's what made me turn the corner. That and S-acetyl-glutathione, and NT factor and other supplements. I still get a little neck pain once in awhile - but I became functional - until the CRPS. I think we'll all end up being smarter than doctors after researching our various maladies. My doc put me on minocycline, and I began running a low-grade fever. Has anyone experienced this?

Thanks for the list! I still have to order the ibudilast.

 

[Who Me?]

Everyone of us takes different things in different combos in different doses because there is no one thing that helps everyone. Good that Valcyte helped you but I can name 10 people that it didn't.

I don't think I said most people are on cromolyn. If I did I meant many here are and there are threads about it. Also tons of threads about histamine and mast cell issues. Just type in the search bar.

Many on forums have been sick for 10 plus years, and most likely have tried everything if not more than you mentioned.

We've learned that all because one thing works for one person doesn't mean it will work for someone else. We talk about our reactions to thing but most never tell anyone that have to take something because it helped them. You just don't know.

If it was as easy as everyone taking the same thing, we wouldn't still be sick.

We already are smarter than most doctors we see. No probably about it.

 

[cherubim]

Yes - I guess there may be multiple things feeding into each expression of these disorders. I have not been involved enough to know.

I suppose it points to each person's unique makeup. I think it's good to compare information because there is that one chance we'll grab the brass ring and it will work for us too.

 

[Remy]

Did your doctor put you on memantimine and idibulast? How are they working for you?

It's working well, but it's early days yet. I'm still messing around trying to find the best dose of each.

 

[cherubim]

I too, was uncertain how much to order, as I am in essence, being my own doctor. Did you order just a small supply to see how you reacted to it, or did you buy several boxes to save money? Are you just taking memantimine and idibulast, or are you taking anything else?

What pharmacy did you order from? I had to order memeantimine, idibulast, and pentoxyfylline from three different pharmacies. I had hoped to save shipping because money is tight. Does anyone know of any pharmacy that sells most anything?

The idibulast is on backorder.

Sorry for so many questions! I am struggling and am doing this on my own. Do you have FMS?

 

[cherubim]

Cort,

You had asked me to let everyone know how I made out with hyperbaric oxygen. I do not recall where that was and am in a lot of pain, so I'll post it here:

1. I had FMS and recovered.
2. I underwent 3 surgeries and then developed CRPS. (Please be careful everyone; even if you have minor surgery. Mine was initiated by nerve damage, but
there is a link to FMS and central
sensitization / neurogenic inflammation (I don't know if they mean the same thing) The pain exceeds all pain scales.
3. I researched and found hyperbaric oxygen works to help CRPS. I was lucky I have an open-minded surgeon who wrote me the script for it. Unbelievably, our
insurance is paying for it. (I prayed they would - so God may have helped).
4. I underwent my 4th hyperbaric treatment. I love the way I feel in the chamber. The hospital's chamber is all-glass with a t.v. and you lay on a bed and they
roll you in, and fill the chamber with pure oxygen, while increasing pressure in the chamber. It has been found to drive oxygen into the blood, which is
helpful for many things - you can research to see if it might help you. When I am in the chamber, I do not have any pain. The only problem I have is that
my one ear got stopped up and my hearing is dulled. Many years ago I had hay fever, and had a tube in that ear. I never should have done it - my ear has
never recovered.

I would recommend HBOT therapy to everyone. You have to get your doctor to write a diagnosis that your insurance will cover. I am NOT saying to lie - I'm just saying that everyone usually has multiple things wrong with them, and you need to see what your insurance will cover HBOT for, and have your doctor write the script for that. The downside is our insurance has co-pays - so I'm cringing on what our co-pay will be.

Hypoxia has been linked to the spectrum of disorders - fms/ cfs - I'm sure Cort wrote of it.

There are other ways to get more oxygen into the body. You may already know this, but if I can help someone through my trials and tribulations, I will. You have to get your doctor to write you a script for an oxygen machine. Our insurance paid for it. You can exercise while breathing in the oxygen (such as using a treadmill.)

So there's the update Cort. I am not cured - so I have to wait and see. 40 treatments are the norm. But it is a very pleasant experience, and something tells me I'm doing something good for my body.

 

[cherubim]

Everyone of us takes different things in different combos in different doses because there is no one thing that helps everyone. Good that Valcyte helped you but I can name 10 people that it didn't.

I don't think I said most people are on cromolyn. If I did I meant many here are and there are threads about it. Also tons of threads about histamine and mast cell issues. Just type in the search bar.

Many on forums have been sick for 10 plus years, and most likely have tried everything if not more than you mentioned.

We've learned that all because one thing works for one person doesn't mean it will work for someone else. We talk about our reactions to thing but most never tell anyone that have to take something because it helped them. You just don't know.

If it was as easy as everyone taking the same thing, we wouldn't still be sick.

We already are smarter than most doctors we see. No probably about it.

Nothing is easy, that's for certain. The quality of doctors is so divergent - it's difficult to find one that is innovative. But then, if they 'step outside of the lines' they are at risk of losing their license. I've read some bad things that have happened to doctors who were really helping people, and they were targeted.

I don't know your age, but the hospital director told me that medicare will pay for things when a person is in their 50's and 60's - after that, nothing. She said "it's like they want these people to die."

So think on that one.