October 18, 2013 at 2:45 pm #600Soprano1Participant
Is anyone familiar with the alpha-lipoic acid/ low dose naltrexone protocol? There is an EDSer that recently said that she feels that she is benefiting from low dose naltrexone and that it is reducing her burning-type symptoms and she was even able to discontinue gastrocrom and cut her ketotifen dose in half. I believe she is reporting that it is helping in other areas as well, such as with pain, headaches and GI problems. I have been looking into the alpha-lipoic acid/ low dose naltrexone protocol a lot lately and it appears to be very interesting. The whole idea is that it tricks your body into regulating it’s own immune system which can be incredibly helpful if you have an autoimmune disorder or any disease where a healthy immune system is vital to fight it, such as cancer.
I’m in such horrible shape that I truly feel that I am not going to be able to survive much longer in this highly inflamed, degenerative state. I really feel that I could die at any moment and I go to bed every night wondering if I will be alive the next day. Anyway, so I’m just about as desperate as you can possibly get. I’m strongly considering traveling from New York to New Mexico to see Dr. Burt Berkson who is supposedly the LDN/ALA guru.
As traveling to New Meixco is likely going to take quite a physical and financial toll on me, I am just wondering if there is anyone out there with EDS that has tried this before (and/or knows of anyone else who has tried it) and has an idea if it would be worth it, especially for the “burning” symptoms and reacting “allergically” and systemic inflammation that some of us suffer from. Can anyone recommend a great physician in the tri-state area who uses this protocol?
~KatieOctober 20, 2013 at 2:38 pm #4531
I am going to be following this thread, because I too have the horrible burning sensation, and am on Gastrocrom for the Mast Cell/GI problems. Sorry I don’t have any input on this yet, but would love to hear if anyone else does!!October 24, 2013 at 11:44 pm #4543Dr. DianaKeymaster
I have tried alpha-lipoic acid in the past (I didn’t really notice any difference and stopped using it, but I’v heard from a number of folks who like LDN. I haven’t tried it because I’m trying to find the ROOT of our problems, but totally respect the thought of “you do what you have to do — whatever works!”. I DID want to comment on the burning feeling, though. I’ve just started running a blood test as I *think* I know what this is, but I’m still waiting on results for the first three patients (you guessed it, my 2 kids and I!) 😉 If you haven’t heard, my research has taken me WAY beyond MCAS because when our mast cells are under control, we still are not! My in-house clinical trials indicated that we have some other issues, too. I’ve backed down on anti-histamines, but needed a ton of them for a while! Now I need less (is it because I avoid most foods high in histamine, or is it because once I got histamine under control, I was back to baseline? I don’t know!) Meanwhile, do I have checklists on you, too? They may help us figure out what the heck is going on! The symptoms checklist is here: http://prettyill.com/resources/view/symptoms_checklist_for_chronic_fatigue_syndrome_m.e Thanks so much! Hang in, OK? Big hug to you both… 😉October 25, 2013 at 8:14 pm #4545
I hope you find some answers for the root of the problem as to why we have that burning feeling because I hate it! 😉October 26, 2013 at 5:02 pm #4550Dr. DianaKeymaster
I hope you find some answers for the root of the problem as to why we have that burning feeling because I hate it! 😉
Ashton, does yours come in waves (maybe with simultaneous flushing), or is it fairly constant?). I *think* there are a few different potential reasons for this. Right now, mine comes in waves, along with tachycardia, flushing and the feeling like I want to jump out of the window — or out of my own skin, as one patient described. I *think* the areas of constant burning (which I also have — party on!) are a different mechanism. Working on both! 😉October 26, 2013 at 8:08 pm #4551
Mine comes in waves. However, I notice it most in the morning, when I am out grocery shopping, or cleaning at home.October 27, 2013 at 2:48 am #4552Soprano1Participant
Hi Ashton!! While I am so very sorry that you are going through this and experiencing the horrific burning too, it is somewhat comforting to know that there are other people out there who are experiencing the same bizarre thing! I HATE it too and can completely empathize!!
Dr. Diana, I really couldn’t agree more! I have been treating my “mast cells” from about every single angle that you can possibly treat them and yet my symptoms are only improving in a minor way. I really can almost feel as if there is something else just burning my entire body. I wonder how many other EDS patients are experiencing this? Do you think it’s a large percentage? I think most of them are just chalking it all up to MCAS because they’re not sure what else to make of it. Thank goodness you are researching it because I feel that literally no one else is actually even attempting to get to the root of the problem!!
It’s good to know that you have tried alpha lipoic acid. I may or may not try to cover up my symptoms with LDN, for the time being, and if I do I will be sure to post about it! 🙂
Meanwhile, I’m incredibly excited for your latest research about the burning to come out! If you can figure this out you I’d owe you my life (because I feel like it’s going to kill me)!
I just wanted to jump in and say that my burning is constant and relentless. There is a chronic baseline of burning that “flares” up with exposure to certain triggers (heat, food,exercise, allergens, etc). When it happens I flush (mostly on my chest but sometimes all over my body), start retching violently and sometimes it’s followed by shaking all over. I’m pretty sure there is some tachycardia in there as well. So I think I would call mine constant but with waves too! That is the same way my “Interstitial Cystitis” behaves. A chronic baseline of burning with flares when I am exposed to certain triggers.
Oh I should also mention that it used to be that it was more of waves and kind of episodic “attacks” in the beginning and as time went on, and it really got more of a hold on me, the burning became more and more constant until it finally got to the point where it just never stops.
I know I have mentioned this to you before but I just wanted to share that info again in case it may be helpful to your research or to anyone else who may be reading and experiencing the same thing. 🙂January 16, 2014 at 1:47 am #4746EDS99Participant
It might have been me …I have had a good run with LDN and your description sounds like me. the Berkson protocol is high levels of alpha lopoic acid (IV) and from what I have read, it is given to patients with incurable cancers or people who did not want to take the chemo. Alpha lopoic is just plain good for the body …especially the liver…but Im not sure what I found expect it to do for Ehlers-Danlos .
What state would you be flying from? There are prescribing MDs for LDN in other places.
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