Significant Improvement Story -- Focus on Thiamine Deficiency

[Gondwanaland]

I tried to give B1 a go and started with 10mg of benfothiamine and titrated up to 40mg over a few days but had to stop because an old rash resurfaced and spread quickly over my right thigh. So I gave up.

There are so many interesting threads about B1. I hadn't seen this one before.

 

[xks201]

I tried to give B1 a go and started with 10mg of benfothiamine and titrated up to 40mg over a few days but had to stop because an old rash resurfaced and spread quickly over my right thigh. So I gave up.

There are so many interesting threads about B1. I hadn't seen this one before.

I doubt 10 or 40 mg is enough to do anything therapeutically.

 

[xks201]

you probably have low cortisol Lynn!

 

[Gondwanaland]

I doubt 10 or 40 mg is enough to do anything therapeutically.

In fact it didn't do anything. I had to stop before getting to therapeutic doses due to the rash.

 

[rebar]

Gondwa, the therapeutic dose was above 500 and ran to 1700. I am in no way suggesting you take it at that level.
It seemed to be an all or nothing response, like a switch being thrown. For example 700 may not work but 1000 would.

I've been thinking of late why I responded, not why it stopped. I have had several things that calmed my system,
primarily the morning wired and tired feeling. the thing that they all seem to share is a direct or indirect effect on the gaba-glutamate relationship. Think fight or flight.
things that have helped,
Lamictal, @ 25mg
B1 @ 1000mg
valerian root, from the product Deep Sleep, this is what got me thinking.
and finally good old beer, I'm now alcohol intolerant but earlier on, my ME/CFS was bad but not as severe as now.
1 or 2 beers in the early evening brought a feeling of normalcy to my system.

interestingly coffee is said to really screw up the gaba response and previously I have been a very heavy
drinker for over 35 years. food for thought.

any thoughts people

 

[Gondwanaland]

@rebar thanks for your input. I have learned the hard way to titrate up slowly everything I take. My intention was to reach therapeutic levels with B1 but had to back off. I don't think I will tolerate it on it's own without B3 and folate due to the severity of the rash.

About beer, I am gluten intolerant, and have very low tolerance to alcohol. The 1st time I drunk 1 glass of beer in my life at the age of 18 I threw up I attribute it to my CYP SNPs - my own hormones are already too much for my liver

 

[Lynn]

old rash resurfaced and spread quickly over my right thigh.

I had my first ever bout of hives after I started the B-1. Through a lot of research and trial and error, I decided it was a histamine reaction. I still take the B-1 but really watch my consumption of high histamine foods. It seems to keep the rash under control.

Lynn

 

[presently_distant]

Just wanted to update my last post...

I believe most of my problems to be related to a magnesium deficiency (as well as others), so I'm not sure if I classify as an ME/CFS patient in the true sense...And I'm definitely not sure if others would or would not respond as much as I have to magnesium alone.

Regardless, I think it's worth adding that I have experienced huge relief from magnesium taurate taken sublingually (I put in between my lower lip and gums and let it sit for however long...because for whatever reason (absorption issues, candida robbing my magnesium) I cannot seem to get any benefit from magnesium taken in pill/capsule form regularly. I can't really stand Epsom salt baths or use mag chloride spray either...

Anyways, I'm getting a ton of relief with fatigue, feeling like I need to nap, and with cognitive issues. Just from 1 cap (125 mg) magnesium taurate (cardiovascular research brand) taken sublingually plus a bit of thiamin taken sublingually shortly after (in my case either the source naturals cocarboxylase sublingual or the country naturals benfotiamine work great).

Not saying this is a cure all or that I'm recovered, but even to get a bit of relief is worth something, eh? And if this info could help someone else, all the better...

Some interesting research I found relating to this...

http://www.ncbi.nlm.nih.gov/m/pubmed/4050546/

http://www.ncbi.nlm.nih.gov/m/pubmed/25693730/

From other research I've come across it appears that magnesium and taurine regulate other electrolytes (potassium, calcium, etc). In my case this area is a big problem. So I think I'm also getting a bit of relief in that way, too. Dehydration is always a problem for me, even when I drink a liter every few hours (only 4 at most a day, though).

 

[pomegranate]

Hi --kinda new here but I've been reading a lot. I saw Cort Johnson's article on B1 and so I have started it. I was already taking 1 or 200mgs a day, so I went on up to 400 then after I saw no nausea or anything but a very slight frontal headache, I went up to 800. The frontal headache got slightly worse, but still not enough to bother worrying about. I am now up to 1200mgs. I feel great. Granted I have been working on recovery for a long time and I do A LOT of stuff to keep myself patched together. Anyway... Last night I went to a movie with a friend and when I came outside it was dark. I was like WOW, everything is so clear. I was reacting like my son did when he got his first pair of glasses. Later I drove to wally world. Driving was so easy! I could not get over it! Then in the store, I was just blown away. This reaction is still going on. I read at the computer all day today. Usually I can only read a short time and then I'm just blind, my vision is so blurry, eyes so tired and achy. It's awful I've been getting those flashes and the Dr said I could get detached retinas if I'm not careful. The eyes feel funny, run, get a film over them, just drive me crazy. Well all of this is so vastly improved I can't believe it is really happening! Can you have a placebo effect if it's something you didn't even expect? I started taking the B1 for completely different reasons! This is day 6 only. Day 4 @ 1200mgs. That is very sudden isn't it? I don't feel any energy boost particularly, but I figure if the thiamine is healing the eyes then they are grabbing all the energy. I know healing takes energy. Comments/questions welcome. I just had to talk about this. I've been on FB talking about it all day. I can hardly stop myself. I had resigned myself to eventually being a blind person. So needless to say, mood is elevated, but probably not directly from the thiamine, lol.

 

[pomegranate]

I start out just about every day thinking this is going to be the day I'm going to go through and make some headway on my own piles of yellow post it and other notebook notes. Almost never happens. Sigh...

I know this thread was happening a long time ago, but wanted to say my brain fog lifted when I started supplementing my stomach acid with betaine HCl w pepsin for my digestion. I think it's more than just digestive, though. I suspect the acid just being there does something. Anyway I can read and study again.

 

[pomegranate]

Well I don't know... I've been reading some more of the thread, working backwards, and I noticed where it was mentioned people doing OK then crashing, and also about thiamine being a sulfur vitamin. I definitely have a sulfur defect and it is active or whatever. So I may crash after a while. I'll have to wait and see. But I think this healing in my eyes is worth it. Mainly sulfur gives me headaches and makes me stink, so that can be tolerated for a couple weeks a year just to nourish these eyes of mine, don't you think? Still feeling happy!

 

[Little Bluestem]

Once the eyes are healed, they might stay well on a lower dose which might not make you crash.

 

[Gondwanaland]

The crash is probably caused by induced deficiency of cofactors, antagonists and synergists. It is hard to figure it out.

 

[Wayne]

I read at the computer all day today. Usually I can only read a short time and then I'm just blind, my vision is so blurry, eyes so tired and achy. It's awful I've been getting those flashes and the Dr said I could get detached retinas if I'm not careful. The eyes feel funny, run, get a film over them, just drive me crazy.

Hi @pomegranate,

I did a couple of emails recently where I shared with some friends some information I ran across on using castor oil for eyes. I also do a daily saline eyewash (1 tsp Himalayan salt to 1 pint of water), and have found it to be quite helpful. I'll paste the castor oil emails below. Good luck with your eyes!
................................................................

This looks like it could be a relatively simple thing to try for eye health...

http://www.castoroiluses.net/castor-oil-for-cataracts/
-
Health benefits of castor oil for cataracts

Castor oil for cataracts is an effective and natural remedy for restoring the sight. The benefits include;

Softens the lens tissues
Castor oil softens the tissues of the lens of the eyes making them flexible once again. This helps in preventing more clumping together of the tissues that may lead to total clouding of the images captured by the eye.

Dissolves the broken lens tissues
This oil from the castor bean seed is effective in dissolving the broken tissues of the lens. The dissolving process takes place gradually leading to clear sight.

Reconstruction of the lens tissues
Castor oil helps in reconstruction of the tissues of the eye lens. This is essential after an injury or eye surgical trauma hence clear vision.

Prevents infections
The oil from castor bean seed protects the broken tissues from infections. This is because the oil has antimicrobial properties that help in protecting the lens from attacks by bacteria and fungi.

How to use castor oil to treat cataracts
Instill two drops of pure castor oil into the eyes thrice a day
Add few drops in warm water and clean the facial region with it.
Pour castor oil for cataracts on a clean piece of cotton pad and cover the eyes for about 30 minutes.​

..............................................

I just ran across this little gem (testimonial) from an 81-year old man. Thought I'd add it to an earlier email I sent out out castor oil for cataracts a couple weeks ago. Interesting timing, as I plan to put my first castor oil drops in my eyes today... Wayne

Here's a LINK to the article. Here's a snippet...

I began my research, hoping to avoid cataract surgery. Many of my friends and family members have had cataract surgery (the most frequently performed surgery in America; lucrative procedure for the eye doctors!) with varying results, some good, some not so good.

I found some recommendations for two interesting natural treatments for cataracts: (1) Castor Oil eye drops, and (2) NAC eye drops (N-Acetyl Carnosine).

I began using Castor Oil - two drops in each eye at bedtime. Using pure, pharmaceutical grade Castor Oil, I bought some eye droppers at the local pharmacy and found the drops were a bit "sticky" but not toxic and there were no untoward side effects other than a little blurring for a moment after the drops were applied, and that my vision improved almost immediately after each treatment. My research told me I would need to apply the Castor Oil for the next two to six months, at bedtime, regularly.

When I returned to the eye clinic for the "more definitive" eye examination, the doctor found the results amazing: 20/20 in both eyes and no evidence of cataracts found. I had been using the Castor Oil for only the 3 weeks intervening between the early August and the late August examinations. The doctor was incredulous and asked me if I had been "doing something" different. I told her about the Castor Oil drops. Her jaw dropped and she called in the chief ophthomalogist who re-examined my eyes only to find the same results. Unbelievable! No need for any discussion of cataract surgery.

And the DMV renewed my driver's license through August 2020!

Unreal! But I am now a happy man! I continue to apply the Castor Oil eye drops regularly, and have added a few drops of NAC through the day when my eyes feel dry. I can read and drive without glasses now. Hard to believe? I lived through this experience. I would recommend anyone facing cataract surgery try this; after all, it can't hurt you to try it and "see" the results!​

 

[Gondwanaland]

Health benefits of castor oil for cataracts

In my personal experience, I used castor oil for eyelash growth 1x and the burning sensation (from salicylates?) was unbearable and I never tried it again.

 

[j3w3ls]

I understand this is a very old thread, but thiamine can flush oxalates out of the body, causing rashes, headaches, hives, painful urination, etc. This is especially true if you are deficient in thiamine, since low thiamine (and b6) are associated with endogenous oxalate production. To learn more, see http://lowoxalateinfo.org. There is also an active yahoo group called Trying_Low_Oxalates. There is an interview with Karla, who manages the yahoo group here: http://nourishinghope.com/pdfs/LowOxalateDiet_Interview.pdf (where Karla mentions the rash on her autistic son).

 

[Rand56]

Has anyone ever tried combining high dose thiamine along with a high'ish dose of Biotin? I ask because I may be having a better effect combining both of these together, than either one on it's own, which I had tried both before in the past. I'm coming at this from the angle of increased CO2 production. I already knew that biotin can help in this regard, but apparently thiamine can too.

For as long as I can remember, I've had this chronic air restriction with my right nostril, and its not from sinus clog because I hardly ever blow my nose! I've noticed that the airway has opened up more, not totally, but better than it's been. Just wondering if me combining the thiamine along with the biotin is giving me a double whammy effect by possibly increasing CO2 levels. I never noticed this before when I tried either one on it's own. I've done some Buteyko breathing exercises before, but that only very temporarily opens up my nostrils. No I don't have any recent labs to confirm my CO2 levels have gone up, but the last time I had labs done, it was at the low end of the range. I hardly think that what I'm experiencing would be placebo.

I'm taking 1500 mg's of thiamine HCL < 3 x 500 > and 5 mg's of biotin. I tried to go up to 10 mg's on the biotin but that just gets me constipated. I'll continue with these doses to see if I have a sustained effect. Surprisingly I'm not getting some acne breakouts with biotin, because anytime I have tried it in the past, I had some. I don't know whats up with that, but I'm not complaining.

 

[Asklipia]

Very interesting @Rand56 ! Is your right nostril a bit more pinched than the left nostril? And has this changed with this new supplementation?

 

[Gondwanaland]

I have been trying B1 on and off and during my last trial I think I figured out how it makes me crash:

• B1 raises cortisol
• High cortisol wastes T3
• Thyroid is required to produce more hormones
• Assuming that my thyroid can produce some T4, I can't convert T4 into T3 and crash

 

[Rand56]

Very interesting @Rand56 ! Is your right nostril a bit more pinched than the left nostril? And has this changed with this new supplementation?

hi Asklipia

No, it's not that I can see that it's physically pinched more. I just notice from regular breathing that the airway is opened up a bit more. Not totally like I said....like when I do a Buteyko exercise where it opens it up as much as my left nostril, albeit for only a very short amount of time.