Adding taurine to the mix....

Good for you!

I suggest you start at 500mg a day for a week. Do you have
any gall bladder symptoms or suspected gall stones? If so taurine may not be for you. It will increase bile flow...as it complexes cholesterol in bile normally. People with obstructed bile duct issues, may not react well to this. It is this action I needed and I have had 4 gall bladder tests showing no stones or sludge but still I'd have attacks. When I started the taurine, those stopped.

If you do not have gall stones you can slowly raise to a ceiling of 3 grams a day. Studies only go up to that dose. But you may not need more than 1000mg a day (like me). I really like the taurine.
It helps with insulin resistance (new studies) and also nerve pain. (stabilizes cell membranes). If after 3 months you see no results of any kind, you can stop it if you choose.;)

Here is a newish link with more recent taurine info:

The Forgotten Longevity Benefits of Taurine - Life Extension
I am putting this up for other readers, as I don't think it appears on this long thread.

mrsD.
Thanks for all the information on this form. I was just diagnosed with SFPN in my feet and legs. I dont have any pain yet just tingle..I used a epson salt bath man did that help
I was on a PPI for 8 years and did not take my vitamins all the time but what I read the PPI inhibits the b12. I had lab test last year when this started and my Dr saib all is good. I just looked them up and my b12 is 350. What would be your advice for this. I am getting another lab test in 2 weeks when I get back from vacation.

Thanks for all the support.

It appears that your B12 is marginally low. 400 is the new acceptable low. But other nutrients are affected by long term
proton pump use.

B12
folate
calcium
magnesium
zinc
some other low dose minerals like copper.

I'd recommend getting your kidneys checked, as new information suggests, kidney side effects from proton pump inhibitor use:

Kidney Damage & Failure: Symptoms, Causes, Link to PPIs

Get tests for kidney, and B12, folate. Stop any supplements for at least 3 days (preferably 7) days before testing.

A DNA test also would be a good idea. MTHFR (methylation) failure is fairly common, and would show you if you need methylfolate form of folate.

I'd take methycobalamin 5mg (active B12) once a day for 3 months and get a retest (stopping a few days before the test).
A goal of 1000 or more would be a good result. You can reduce to 1mg a day if you are testing high enough. Always take B12 on an empty stomach so passive absorption can work for you.

Thanks.
I forgot to add that I was on a multi vit for about 2 weeks when the Dr did the test last...I told him and he said it was not a problem....a few days after I just got busy and stop taking any vit...
So I will stop all supplements...I week out.
Thanks

An RDA dosed multivit would skew your results to show "normal"...when you may have been low to start. They are not likely to show high blood results however.

A multivit with higher than RDA will show higher blood levels in some people if it is not stopped before testing.

The high B12's we use here to help fix low B12 can show a high blood level and spook the doctors most likely. This is not a problem and to be expected. A vitamin with high B6 in it will also give high blood tests. These are called factitious results.

For over all blood vessel and nerve health with possible regeneration what other Vits and supplements would you recommend.
EPA
DHA
FLAX
GLA
D3
B1
ect...
Thanks

It is best to start slowly.... Just the nutrients you know you may be low in... the list I gave that are blocked by proton pump inhibitors.

The B12 should have a clear path, so you can see if your symptoms are improved simply in the beginning. You can add in things as time passes, slowly every 2 weeks. Much of deciding nutirents to supplement, is observation.

B12 is a powerful supplement. People notice its improvements fairly quickly...you want to see this too. If other things are there cluttering up your progress you won't know what part the B12 is playing.

Thanks I got my blood test next Thursday. I understand how much b12 to take at first. How much of the other owns when I slowly introduce them. Can I still soak my feet in epson salt every couple days. The first time I did that it was amazing how great they felt.

Thanks so much for the help. I or the DNA test 23 and me

Yes, you can do the epsom salts any time. Your clear response to them suggests you have some poor circulation going on.

Magnesium opens up blood flow to the extremities. It also blocks NMDA pain receptors, to send pain signals.

Since you notice improvement with epsom salts suggests you should consider oral chelates as a supplement. 200mg elemental
magnesium or 2 Slow Mags a day is a good place to start. Oxide form does not dissolve in the GI tract and is not absorbed, so avoid products with Magnesium Oxide in them.

uplementssssss
 

thanks mrsD. What supplement would help me sleep at night my mind keeps racing. As far as magnesium I have Magnesium Glycinate will this work.

Yes, glycinate works.

The magnesium should help. Do your epsom soaks before bedtime and it will help.

Thanks.
Question. I was taking acetyl-L-carnitine 500 mg;/day and a-lipoic acid 600 mg /day..I remember reading that this can work like a stimulant, It did in me could not focus felt hyped up could not sleep. I stopped taking and now I feel fine, I would like to take these but not sure if I would get the benefit if I take one every 3 days so they are not taken together or would it be better to take in a 50 mg/day to start and see how they work.

Thanks

sorry I am late to answer you. I typed out one yesterday and hit send and left this laptop which went into some cyber ether problem. I seem to have wifi with ATT go wonkey here in my living room.

I guess that post got lost then, as I discovered last night that my answer never posted.

Some days things seem okay and others, well, I get error messages!

Let me try again...

Both of those supplements you mention are specific for mitochondrial energy production. I typically only suggest them after the more common supplements fail.

I tend to think that if someone gets revved up from something it might indicate you are not low with them. Or that you are taking too much.

You could try a low dose every other day, and see if you see any changes in your PN. It is best to go slowly than taking many new things all at once. Try to resist the common, pill popping that people in the US tend to do. It may be that one common supplement will be your best bet, but taking too many things at once in the beginning, may hide that information from you.

Be aware, that lipoic acid is available in 3 different forms and the dosing for each is quite different.

I think I accidentally discovered that R-Lipoid-Acid is critical to my comfort. At some point over past few weeks, I finished a bottle of it, and forgot to open a new one. It fell out of my supplement regimen.

In mid-January I started what I thought was a typical 2 or 3 day flare, but instead, it just kept getting worse and worse and over the next 3 weeks. By last Friday night, my feet were on fire and I was feeling near constant "rushes" body-wide. I hadn't felt that bad since 2014, and I was worried I was progressing and getting pretty scared.

When I was getting my supplements all divvied up for the week on Saturday, I suddenly realized that I didn't have RLA in the mix. I couldn't remember when I'd run out, but it had to have been a few weeks. I had a new bottle ready to go, but just hadn't opened it.

Long story short, as soon as I started back up with it Saturday morning, I started seeing improvement, and today I'm just about back to normal (my normal...not normal normal).

I'm going to assume it's not just a coincidence.

I have this reaction when I try to eliminate SAMe. I had stopped
it for the 4th time, and bingo my left (good knee) went out! Still have to wear a light brace though.

So I am back on 400mg a day and slowly improving! sigh.

My joy was short-lived, as was the flare-relief. I've returned to full flare status. :eek:

Update on how I feel.
 

Update.
I am taking the supplements and concentrate on the B12 in the morning before I get up at east 2-3 hours so it is on a empty stomach. Only been doing this for close to 2 months. I don’t have the burning on the top of my feet and up my shins any more. I soak my feet a couple time a week and it really helps.
I can really tell that I was lacking in a lot of nutrients, my legs don’t cramp any more, climb stairs my legs don’t feel heavy and tired.

I have some days where things feel somewhat normal, whatever normal is.

In a way things feel like they are stable and getting better. I really feel this was caused by using PPI for 7-8 years and not taking supplements and all of this started in my right foot 4 years ago and my neurologist was clue less he thought it was from my spinal stenosis in L4-L5.

I do think it is a contributing factor to this because if I roll over on my back in the middle of the night my legs go numb from my hips to my feet…than when I move to one side I can feel the feeling come back when I told him this it did not seem to matter to him. I have changed Dr’s and go to the new Dr 3/13 to discuss this.

Thanks for all the help on this

folate
 

mrsD when i had my tests it came back that my Folate was greater than 24ng/ml I feel that my condition was caused by B12 deficiency from use of PPI for 8 years. I am taking 5000mcg B12 every morning is there any thing else I should be doing or increase this for a few months.

Thanks for the help

Greetings, mrsD,

So I'm once again going down the rabbit hole.

Compliments of genetic testing, I've learned that I have one bad copy of a variant associated with biotinidase deficiency. Two copies is bad news, but supposedly one copy causes no issues except that my biotinidase levels may be lower than what they should be. Apparently this variant is not very common and appears in only 2% to 3% of the population. The thing that I also noted is that it apparently affects metabolism, and I know I have something weird going there as well.

I've seen you post on biotin several times, and just wonder if you have any insight into this? I can't make heads nor tails of these diagrams to figure what I might be able to try to improve the situation beyond taking more biotin (I take 10 mg/day). I noticed they talk about acidosis here as well, and if you recall, I have those odd "rush-like" sensations in isolated parts of my body which you at one time said it sounded like acidosis.

http://www.wohproject.org/media/univ...deficiency.pdf

Any thoughts at all appreciated.

Janie

Putting some additional reference info here:

BTD: c.1330G>C* rs13078881

rs1378881 - SNPedia


This variant is implicated in partial and profound biotinidase deficiency. Alone, this variant is estimated to have a 52% loss of enzymatic activity. This variant is often found with A171T, and together they are reported to cause profound deficiency. Notably there is a report of asymptomatic double-mutant adults, so symptoms may have variable penetrance. This variant is found compound heterozygously with more serious mutations in cases of partial biotinidase deficiency.

A171T - (BTD):c.511G>A (p.Ala171Thr) rs13073139

I see 3 things so far, but I have not studied the charts on your link fully yet.

1) you might need some carnitine support.

2) the acidosis is created by two acid problems. The most obvious one is lactic acidosis. This affects muscles. This may be why your leg spasms after activity.

3) you will most likely need biotin supplements for life.

One article I read today says people with only one good copy of the normal gene may only show symptoms when stressed as adults. This means you need to watch physical fatigue carefully.

To start with, I have a suggestion for the acidosis. I am using this now myself... Alka Seltzer Gold. This is the alkaseltzer without aspirin. It is only available online and not in stores. If you read the reviews, you find Lyme patients use the Gold to reduce Lyme pain. I found that very intriguing, since most Lyme pain is nerve pain.

Amazon.com: Alka-Seltzer Gold Tablets- Non-Aspirin, 36 Count Box: Health & Personal Care

This formula is similar to a product doctor's use called
K-salts. K-salts are used to block sudden allergic reactions in children by specialists in allergies and environmental doctors.

It is more complete, the Gold, than plain bicarbonate tablets.
I'd try them if I were you. Start by using one tablet which 1/2 of the dual pack they come as. I am using only one tablet a day now, and it appears to be working. Helping allergies and my severe knee attack which might have been gout. I have borderline high uric acid for many years, but the doctor says no treatment is really necessary for it. duh? But my knee which was extremely acute, is now no longer like that. I have pain level 2 in it now compared to the pain 10 when the sudden attack happened.
When I searched OTC gout treatments, bicarbonate came up at many sites.

I noticed other improvements too with the Gold-- my stinging eyes stopped, my toes stopped hurting at night, and I am sleeping better.

So I think it is worthwhile to try AlkaSeltzer Gold and see what happens for you. Post to me after you have been doing one tablet each day, and we'll see how you react. You might need more, but my response to just one, tells me that it might be a very subtle thing and a low dose may be all you need.

And I'd stop the benfotiamine for now and try low dose carnitine instead. 250mg, or if you cannot find it, then 500mg a day for a month. See how you feel.

I also saw on one of your charts, that lysine is blocked with this deficiency. Since lysine is so inexpensive and benign to take you might need this too. But it is your decision to take it. I am not sure how lysine fits in with this deficiency.

It is amazing how little we understand about our biochemistries.
You would have never known this without that test, and no doctor would have diagnosed you with this genetic mutation either. If you are married and plan to have children I'd have your husband take the DNA test too. If he is running on 1/2 biotin levels...you could have a child who could be really in trouble.

Can't thank you enough. I've placed the Amazon order and will do all you suggested.

This variant showed up in the whole exome test I took and was right at the top of the variant list. 23andme also tested and shows the SNP, but it's a crapshoot what variants they put in reports (when they were allowed).

Children aren't an issue as neither of my sisters nor I have been fruitful and multiplied. My one sister who also took the 23andme test has the variant as well.

The biochemistry is just baffling to me, so I appreciate your take on it.

Will report back after I've been on the regimen a bit. So glad you're feeling better!

Folate
 

mrsD my Folate is over 24ng/ml trying to understand is this can cause any issues

Thanks

People with low B12 can have elevated folate. This is called the
folate trap. If you take vitamins or eat lots of fortified food the folate could show high in testing.

mrsD, Thanks
 

I am not diabetic my A1C is in normal range, fasting glucose is 93. But if I eat foods that push my sugar up I have burning in the feet. I think back to when my wife and I would go out for Burger and a Beer by the end of the night I was on fire and the next morning it would go right thru me. I have went on a gluten free diet and stopped all processed foods, I feel better but time will tell. Thanks

MTHFR Mutations and Supplements
 

I just got my 23andme completed and I am Compound Heterozygous Mutation I have one of each. Reading thru all the data out there on this it is confusing.
To remove toxins I need to exercise more got it, but for the multi vitamin I take I need to make sure it contains no folic acid is this correct and I need to supplement with methylfolate

Thanks for the help

It has been suggested that folic acid will interfere with methylfolate, especially at the blood brain barrier. But I haven't seen proof yet of that conclusively.

Those in the US will find it difficult to get rid of all folic acid from the food fortification program.

Heterzygous means you have some methylation going on, but perhaps not enough for a full life.

I am not an expert on this methylation stuff. Have you been to
MTHFR.net yet? That site is pretty complete and you can study it at your leisure.

Check your other SNPs listed too. Janieg here just found out in her genetic list that she has a mutation involving biotinidase, which recycles biotin. So she needs high dose biotin to make up for this lack.

As time passes here, we are seeing more and more posters showing up with mutations in their DNA which contribute to PN and many other medical problems.

It is a good thing you had the testing.;)

So I th ink the Alka Seltzer Gold has helped tremendously with the horrendous "rushes" I was having. They've gone from waking me up at night, to barely noticeable.

I have to admit that I cheated, though. When I wasn't feel much of a difference early on, I went to one in the morning and one in the evening. I truly think it's helping.

I had another "interesting" experience a couple of weeks ago. I decided to step my war on gut health and increased my probiotic intake both supplement and food-wise. What ensued was nothing beyond intestinal hell. Now I can't say for sure that was the cause, and maybe it's possible that I got a virus or something, but holy schnikes did I get sick. I missed 2 1/2 days of work which is the most I've missed in decades. Anything that went in my mouth went right through me. I was trying to stay hydrated so I was downing water frequently, and for nearly 18 hours straight, I was running to the bathroom at least every 10 minutes! I also had a low grade fever for two days, and of course every nerve in my body was on fire.

Do you think it's possible to herx from probiotics? I keep hoping maybe I killed off some baddies by overrunning my system with the good stuff.

My hubby had 3 antibiotics because he was bitten by a spider and didn't notice and it became a cellulitis and had to go to the ER for an IV.

Since then, I made him finally quit smoking his pipe... no easy task. Then the GI stuff started over the winter. We have been trying all sorts of stuff. Probiotics gave him diarrhea. His usual foods gave him monster gas. He had bouts of terrible nausea which was unpredictable. Metamucil gave him more gas.

But we finally found out what works... Benefiber. It has been a long haul to get to the comfort zone he likes now.

The AlkaSeltzer Gold has mannitol in it... if you take two a day you might be getting the laxative action of mannitol?

I am taking one tablet of AlkaSeltzer original in the morning and one tablet of AlkaSeltzer Gold at night. When I took 2 Gold at once I did get upset GI wise... but that was only once. I am super sensitive to being loose anyway. So I only use one Gold now at night.

The Equate version of Alka Seltzer original does not have the mannitol in it That is the brand I use. The mannitol I guess is to block the saltiness taste of the Gold ingredients.

Your option therefore is to try just sodium bicarb alone when you want more bicarb. I am still doing well with no more burning at night on my current dosing. Because I have the joint pain of arthritis, I still want "some" aspirin, so I use the AlkaSeltzer original, but I don't want so much aspirin that 2 tablets provide.

I put this link up on another thread so incase you haven't seen it there here it is again:

People of the Acid: Acidosis and Pain - Pain Online

Thanks for the link...very interesting read!

My gut is back to normal now, and while I'm still taking the new probiotic, I've cut back some on the yogurt/kefir/komboucha.

For right now, I feel better than I have in a long time. I hate to jinx it, but even my neuropathy is running at a very low level. It's still ever-present, but I'm not having any discomfort. That's always ebbed and flowed, though, so time will tell. What is a marked change is the absence of the crazy rushes. VERY pleased about that, so thank you!

I have been wondering how you are doing.

It will take time for you to heal some, with the new supplements.

I get a weird feeling down my left leg occasionally. It is like a giant goose bump flush. Is that what your "rushes" feel like?

My left foot/ankle had that big surgery when I was twelve and did some nerve damage then. The numbness took years to go away, and sometimes now I have ankle pain, instep pain, or these goose bump feelings coming from the thigh. Since I have been using the Gold, however they are almost gone.

I am glad you are feeling better. I notice a distinct improvement in my stamina (esp climbing stairs) with the carnitine too.

Yes, that's a good description of it as well. Mine come in waves, but lingers for a bit before subsiding. There's no apparent reason for why one particular part of my body is being affected at any given time. One night not too long ago, I was actually woken up by it. My entire torso was experiencing it...pelvis to neck. I woke up and actually said out loud, "Seriously?!?!!? Is this necessary????" Then I fell right back to sleep. Just another day in the sensory fun factory. :D

MrsD,

I'm trying not to get to excited about this, but...

On whim today, I decided to send Dr. Barry Wolf MD PhD an email. I found his email address on a biotinidase deficiency research report. He's a pediatrician in Detroit, and appears to be a leading researcher on the deficiency. I didn't think the email would ever actually get by an admin assistant, but he got it. I had explained my BTD variant finding and my neuro problems, and just asked if he had any thoughts if there could be a connection. He emailed me back within a couple of hours and asked for my phone number. :eek:

I didn't hear from him tonight, but my fingers are crossed.

That is promising! I hope he has something further to suggest for you.

He called me this morning. VERY nice man and very helpful. We probably talked for 10 or 15 minutes, and he explained quite a bit about the genetics of the BTD gene and what my specific mutation meant and doesn't mean.

He advised me to go to my doctor and get the biotinidase enzyme activity test. That's the only sure way to know my level of deficiency. Whether or not it could factor in to my neuropathy is a big unknown, but he'd be very interested in knowing how deficient I am and wants me to let him know.

Like you mentioned, how would anyone ever know they are? Only babies are tested, so the number of adults who ever find out they're deficient are just those 2% - 3% who have children with another 2% to 3% who then go on and incur that 25% chance of having a child born with 2 copies of the variant. It's obviously a very small number.

So I made an appointment with my internist for next Wednesday, and am hoping she'll order the test.

With regard to this acidosis thing, is that something could be tested for. After a quick Google, it looks like there might be a test? I'm still poking around.

Forgot. I flared out of nowhere yesterday after feeling pretty good for several days. Discovered something...the only salad dressing I ever buy has MSG in it.

I saw my doc today. I think she thought I was completely off my rocker until I told her this biotinidase expert called me from Detroit. Not surprisingly, she didn't know what biotinidase was. She Googled it while I was with her and pulled up one article or research report after another written by this doctor in Detroit. I think it gave me credibility.

She said she was happy to order the biotinidase test, but warned me, "I'll have no idea what to do with the results." I assured her that I knew that, and that hopefully Dr. Wolf would be able to offer some guidance. She was happy to hear that, but then also said that worst case, she would make some calls and see if she couldn't find someone to make sense of it.

Once again I'm in that "please give me bad test results" place. :rolleyes:

I just took the time to read a LOT of this thread and a LOT of very very good info here..thanks all.

Could you summarize it for those who haven't got time to read it? :)

(bullet points will do!)

Does anyone remember a poster on this forum who had self-trialed Pirenzepine for a period of time?

I've tried searching for the posts but nothing comes up. I don't think I imagined it . . .

Thanks
Paul