Dear Guys,
Polyherbacy may play an important role in the management of EM and EM-related conditions.
What do you take in terms of vitamins, supplements, minerals and/or herbs?.
How have they helped you?
God bless
mads
My doctor told me to try Vitamin B1. He said that way back when that was the prescribed remedy for people with burning feet. I took it for a while and it may have helped a bit but no startling result for me. For the past few months I have been taking Sulfurzyme from the Young Living Essential Oil Company and have also been taking their Ningxia Red and I have noticed a marked reduction in the number of flares I had been experiencing and also I recover much quicker when I do have a flare.
Hi…I have EM, raynauds, neuropathy and arthritis in my feet. I started taking Benfotiamine (fat soluble vitamin B1) 300mg in am and pm (600mg). My neuropathy is so much better and my EM is too. My feet still swell if they are down for awhile, but they don’t hurt. I’ve been taking it for 3 months. It’s such an improvement, I can hardly believe it. Hope this helps someone else. Sharonlee
Where do you get the Benfotiamine?
I get Doctors Best (brand name) on Amazon.
What a useful discussion.
I take Vit D and pro-biotics if that counts. I am lazy and ought to be researching more which supplements could help. Any oils give me awful stomach cramps and so do multivitamins so I kind of gave up on finding help there.
- Veg protein nutritionals ' Green Magic '- its all amino acids, spirullina, wheat grass, seaweed, Lecithin, soy etc.......
- Fruit smoothie shakes with 'Green Magic' 3 times day
- All soya products no dairy
Prescribed build up nutritional drink - lost lot of weight, no appetite so take this has all the necessary vitamins
- Silica - lost nearly half my hair
Magnesium via Epsom salt baths (cold) and Mag spray. I prefer to absorb via skin.
Omega 3
Alpha-Lipoic Acid
B complex - 1,2,3,6,12
- Vit D and calcium
- Vit C with zinc
- Collagen tablets (something new im testing for connective tissues as has all those rare amino acids no one ever talks about such as arginine,lysine......)
- Ferrotin with C (Iron)
Big vitamin supplement containing -
- Folic acid
vit e
biotin
- zinc,
- copper,
- manganese,
- selenium,
- chromium,
- iodine,
- cystine,
- carotenoids,
- grape seed extract.
Have also tried SAMA and 5HTP
Think thats all ;)
No - there is more ;)
No caffeine (Redbush tea for natural antioxidants)
No spicy
No carbonated drinks
Allergy test foods first (I have a free guide if anyone interested so you can self test to avoid forking out hundreds of pounds/dollars)
Several older posts touch on this topic and , in particular, diet .
http://forum.livingwitherythromelalgia.org/forum/topics/are-certain-foods-the-root-of-the-problem
http://forum.livingwitherythromelalgia.org/forum/topics/anyone-helped-by-diet
http://forum.livingwitherythromelalgia.org/forum/topics/diet-to-keep-flares-at-bay
Hi mads,
Several months ago, after reading the second link (medicationsense) I decided to stop taking Garlic, B-12 (Methylcobalamin), and CoQ10. About the same time I had a medication change and much needed relief from pain so guess I'll just continue using medication instead of those three supplements.
The article helped me a lot. Thanks again for all of the info you share with us!
Bluesnrocrul
Anyone take Agmatine Sulfate ?
Saw that they have being doing clinical trials with this in neuropathic pain. Interesting right?
AS is a biogenic amine that is derived from the amino acid L-Arginine. This occurs due to a process called decarboxylation, which is the removal of a carboxylic acid group from the amino acid. The resulting compound, Agmatine Sulfate, appears to be stored within the neurons of the brain and is released as these neurons become activated. Due to this interesting process and storage mechanism, Agmatine Sulfate has actions and activities that are very different from its predecessor. It also appears to be a promising supplement in terms of neuropathic pain, drug addiction, stroke protection, and even general cognitive health. It is also considered to be a novel neurotransmitter, or at the very least a neuromodulator.
I started taking arginine by chance. Too early to comment.
God bless
mads
Foods and Food Additives that may cause FLARES in EM
Posted by frostbite on October 8, 2014
I am in the process of reconsidering my previous diet and only take Vitamin D plus Vitamin C if I feel I'm on the way to a cold. In principle I am interested in several of the things mentioned, especially ALA, Lysine and Vitamin B1/Benfotiamine. But I am also in the middle of testing carbamazepine so I have to wait with new supplements until I know whether carbamazepine is helpful, useless or even counter-productive.
Concerning Agmatine Sulfate, it definitely sounds promising, I keep my fingers crossed.
Greets,
Ben
I have tried the elimination diet under care from my doctor but unfortunately I didn't find any foods that made me any better for not having. That except the typical Alcohol and spicy food but I knew that going in. I know some people are more sensitive and could benefit with this trial with help from your doctor.
I do get b12 injections every month and I do take vit D supplements for my lack of sun that goes with the territory.
Take care,
Alina
Like lidocaine and mexiletine , carbamazepine(anti-seizure medication) is a single amino acid substitution medicine - a sodium channel blocker.
Carbamazepine is a medication we have not really talked about but several studies report carbamazepine relieved pain in genetic familial EM, apparently by working on the Nav 1.7 sodium channel. Interestingly ,research is currently being carried done on Carbamazapine (Tegretol ) for Inherited Erythromelalgia Patients With NaV1.7 Mutations. This study is enrolling participants by invitation only.Dr Waxman. Connecticut. Study closes 2015.
This research study is designed to investigate brain response using fMRI scan, and behavioral responses, to treatment with the drug carbamazepine (CBZ) in patients with the painful sodium channelopathy inherited Erythromelalgia (IEM). This study is designed to identify the central nervous system (CNS) regions that are activated during ongoing or evoked pain attacks, and the altered CNS response to CBZ treatment. This will advance our understanding of how IEM affects the brain. We also hope to validate a pharmacogenic approach to the study of IEM by use of an FDA approved drug. We hope, but cannot be sure, that subjects will directly benefit from this study.
Please let us know how carbamazepine is working for you Ben84.
Hope it is bringing you some relief.
God bless
mads .
Concerning carbamazepine: At the moment, my EM is spreading and becoming a regular visitor in my face (centered on nose) and occasionally scalp. Also, there is more EM-pain in knees and occasionally shins, but they are both use-dependent and some days do not occur, if I keep my legs un-clothed.
All of this started before I began carbamazepine so I do not ascribe the progression of my EM to carbamazepine. I started with 100mg morning and evening for one week, and am now in week two with 200mg per dosis. Week three will be 300 per dosis and from week four on it will be 400mg. As soon as there is any effect to report, I will let you all know.
Carbamazepine is thought to affect sodium channels in a way which reduces the hyperexcitability of my periphal nerves. The doctors also think a gain-of-function mutation in gene SCN9A (responsible for some sodium channel playing a role in starting a pain signal within a nerve cell) might be the reason. Therefore, I'm due to having a blood sample analyzed for mutations in gene SCN9A. The reason that this could not be done from within the neurology department of our hospital and for the time it may still take is German law and burocracy...
I'll let you know if there is anything to report.
Greets,
Ben
mads said:
Like lidocaine and mexiletine , carbamazepine(anti-seizure medication) is a single amino acid substitution medicine - a sodium channel blocker.
Carbamazepine is a medication we have not really talked about but several studies report carbamazepine relieved pain in genetic familial EM, apparently by working on the Nav 1.7 sodium channel. Interestingly ,research is currently being carried done on Carbamazapine (Tegretol ) for Inherited Erythromelalgia Patients With NaV1.7 Mutations. This study is enrolling participants by invitation only.Dr Waxman. Connecticut. Study closes 2015.
This research study is designed to investigate brain response using fMRI scan, and behavioral responses, to treatment with the drug carbamazepine (CBZ) in patients with the painful sodium channelopathy inherited Erythromelalgia (IEM). This study is designed to identify the central nervous system (CNS) regions that are activated during ongoing or evoked pain attacks, and the altered CNS response to CBZ treatment. This will advance our understanding of how IEM affects the brain. We also hope to validate a pharmacogenic approach to the study of IEM by use of an FDA approved drug. We hope, but cannot be sure, that subjects will directly benefit from this study.
Please let us know how carbamazepine is working for you Ben84.
Hope it is bringing you some relief.
God bless
mads .
Read this on butterbur. Dr Cohen mentions it on medicationsense. Vasoactive properties.
Used for migraine - lots of us have found some of the triptans help a little. Interesting alternative :)
http://www.medscape.com/viewarticle/838939?src=wnl_edit_tpal&uac=222157BT
Hi Guys,
I know I keep going on about diet and supplements, but its something most of our medics fail to look at. From my own work, I am convinced that this is something for consideration. Simplistically speaking, as the microvascular network supplies the nerve with nutrients shouldnt we look more closely at vitamin deficiencies/malabsorbtion that may be exacerbating matters (we really dont know do we?). Moreover, many of us have serious autonomic dysfunction, so giving our poor old bodies a break ie: rest rather than digest , would minimise expending that precious energy needed by our immune systems - remember 70% of the immune system is in our gut!
I know this is only one case study but its a protocol that suggests food for thought (no pun intended lol!). It highlights a nutritional supplement (basically its a proprietary blend of reduced iso-alpha acids-derived from hops, vitamin D3, selenium, and zinc), and an elimination diet (wasnt specified in any detail ,so I attach article separately).
'A Case Study Evaluating the Effects of an Inflammatory- Modulating Medical Food and a Nutritional Supplement Containing a Proprietary Blend of RIAA, Vitamin D3, Selenium, and Zinc in a Patient with Erythromelalgia and Raynaud’s Phenomenon.' ( Kornberg ,2011)
Aside the study, just wanted to reiterate that the following supplements have been shown to reduce the pain associated with neuropathy:
- Fat-soluble vitamin B1 (benfotiamine) - 150 milligrams (mg) one to three times daily
- Acetyl-L-carnitine - 2000 mg daily
- R-lipoic acid - 300 to 450 mg daily (or alpha-lipoic acid: 600 to 1000 mg daily)
- NAC - 600 mg daily
- Curcumin - 800 to 1600 mg daily
- Gamma linolenic acid (GLA) - 900 to 2700 mg daily
- EPA/DHA - 4000 mg daily, providing at least 1400 mg EPA and 1000 mg DHA
- Vitamin B6 - 100 mg daily
- Vitamin B12 - 1000 micrograms (mcg) of the methylcobalamin form, taken one to four times daily (up to 40 mg daily methylcobalamin may be used in extreme cases)
- Vitamin C - about 2500 mg daily
- Vitamin E - 400 international units (IU) daily (with around 200 mg gamma tocopherol)
If anything , try to check:
- Thiamine deficiency -.one of the simplest and cheapest things to remedy .The typical complaints of weakness and burning feet are often disregarded
- Gluten sensitivity
- B12 levels - too high or too low
- Vitamin D levels -85% population deficient levels. High Vit D being used to help other neuropathies such as fibromyalgia, peripheral neuropathy etc.
- Vit E - lot of work done on Vit E and neuropathy in cancer
- Zinc - one of its functions is that it helps metabolise that vital B12
Check your thyroid function , too :)
http://forum.livingwitherythromelalgia.org/forum/topics/spotlight-on-...
When I first got EM, 6 years ago, I was taking lots and lots of vitamins and supplements. In fact I was taking so much, my first explanation of where the EM came from........was from taking tooooooooo much. So the first thing I did was to stop all vitamins and supplements, hoping this would cure the EM. It did not. But then again, I didn't get worse....at least didn't get worse rapidly. Since then, I have tried vitamins and supplements and they do not seem to help nor hurt. Jim