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SFN - alcohol makes symptoms worse but is it the cause?

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Old 07-10-2016, 11:07 AM   #11
mrsD
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Most of us here that use B12 keep our levels at 1000 or more.
400 is the new acceptable low...so you are borderline.

Both methylB12 and methyfolate need the enzymes to be methylated from inactive food sources. Folic acid is inactive until methylated.

Many people can have this mutation, and some only have it on one chromosome, so they slip by for years until something sets them off and they need more methylation to repair damage to tissues and nerves. This is called homozygous. If the mutation comes to both chromosomes, it is called heterozygous and appears earlier in life. So some people don't show the symptoms depending on how their mutation occurs. It can get pretty complicated, but as time has passed the percentage reported in studies has risen from 10% of the population to about 40% having some form of the mutation.

Read over at MTHFR.net... you'll see. At pennies a day for both methylB12 and methylfolate, it is not burdensome to use them.
Stop them for several days before testing, and be sure to take the B12 specifically on an empty stomach as food present in the GI tract blocks absorption.

Your experience with the venom may be connected, as the body may make antibodies to it, which remain after the initial incident. They can then contain peptide sequences similar to our own tissues, which then get attacked in the future. This happens with some viral illnesses too. This is called molecular mimicry.

Some PNs are mechanical --- involving compression of nerves somewhere in the wrists, ankles and spine.

Some are chemical -- drug induced, toxins, poisons, chemo etc.

Some are immune mediated-- autoimmune

Some are metabolic/hormone induced-- diabetes, thyroid malfunctions, paraneoplasia, etc.

Some are nutrient deficiency induced-- B12, B1, B6, folate, Vit D and E etc.
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Old 07-10-2016, 11:51 AM   #12
linter
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No one loves vodka more than me. It makes me a happier, better, more productive and fun-loving person. I swear to God, I was made to drink. Unfortunately, however, even one drink causes the fuzziness in my feet and legs to increase and move up my body. And I never drank one drink. Always a pint or more. I love vodka!
For a while, I'd go two weeks off, two weeks on. But then the fuzziness in my legs stopped going away during the off weeks. I'd done permanent damage. I could walk a city block before, now I can't. Now I can barely make the rounds of a mini-super-market.
So, just three week ago, I stopped drinking entirely and hope to stay forever a less happy, less better, less productive and less fun-loving person.
What a flippin' mess.
I do not think I was ever an alcoholic, since I could stop drinking at will. And I don't think booze was the cause of my disease (the CIDP variant of PM), since it started during a 19 year stretch when I didn't drink at all. But I know for a fact that my beloved V made my symptoms worse and that I allowed it to do damage that'll never leave.
Sigh.
Unlike everyone else here, I don't take any supplements. I've tried all of them over the years and none seemed to make a difference. That said, I'll probably soon start up with them again, to see if now is different. One can only hope.
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Old 07-10-2016, 02:06 PM   #13
JimJamJones
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Quote:
Originally Posted by mrsD View Post
Most of us here that use B12 keep our levels at 1000 or more.
400 is the new acceptable low...so you are borderline.

Both methylB12 and methyfolate need the enzymes to be methylated from inactive food sources. Folic acid is inactive until methylated.

Many people can have this mutation, and some only have it on one chromosome, so they slip by for years until something sets them off and they need more methylation to repair damage to tissues and nerves. This is called homozygous. If the mutation comes to both chromosomes, it is called heterozygous and appears earlier in life. So some people don't show the symptoms depending on how their mutation occurs. It can get pretty complicated, but as time has passed the percentage reported in studies has risen from 10% of the population to about 40% having some form of the mutation.

Read over at MTHFR.net... you'll see. At pennies a day for both methylB12 and methylfolate, it is not burdensome to use them.
Stop them for several days before testing, and be sure to take the B12 specifically on an empty stomach as food present in the GI tract blocks absorption.

Your experience with the venom may be connected, as the body may make antibodies to it, which remain after the initial incident. They can then contain peptide sequences similar to our own tissues, which then get attacked in the future. This happens with some viral illnesses too. This is called molecular mimicry.

Some PNs are mechanical --- involving compression of nerves somewhere in the wrists, ankles and spine.

Some are chemical -- drug induced, toxins, poisons, chemo etc.

Some are immune mediated-- autoimmune

Some are metabolic/hormone induced-- diabetes, thyroid malfunctions, paraneoplasia, etc.

Some are nutrient deficiency induced-- B12, B1, B6, folate, Vit D and E etc.

wow, okay reading through that MTHFR website is hard work, as was the molecular mimicry wiki page! Im usually a fairly technical guy but im definitely struggling with all the tech terms used there! From what i can gather though it seems like it could be very feasible that i could have the MTHFR mutation though...

With this is mind, I wanted to clarify: as a quick test would you say that taking both methylB12 and methylFolate together is the best way to see if i have the MTHFR mutation, outside of having the official MTHFR gene test? if i take the MethylB12 and the Methylfolate together for 3 weeks or so, should i start to see some results? and what quantities of each should i be taking daily to start?

thanks
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Old 07-10-2016, 02:25 PM   #14
DavidHC
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It did. Well, sort of. What I describe there, the intense shaking and leg symptoms that spread to my entire body within a few months, maybe 2-4, did come on quickly. But I may have also noted there that in hindsight during the last year I've come to realize it went back at least a couple of years before then, that there were symptoms then, just not obviously connected to neuropathy. Just a few months earlier my hands would go all dry and sometimes even numb, which I thought was weird. A few months before that I had numbness around my nose, so my upper cheeks. I didn't make much of it. Both these symptoms would be more intense during a night of drinking beer and the morning after. I didn't make the connection, or I didn't want to. Idiocy either way. Even before all this, perhaps several months before it and at least a year before the neuropathy became apparent, I had heart issues, palpitations, which at first presentation lasted almost 2 days. It happened while I was drinking beer and eating very carb dense meals, lots of corn, rice and bread. I didn't make the connection really. I simply thought I was eating poorly, so I stopped eating out as much and drinking so much beer. It improved, but then my old habits returned. The palpitations never returned to that extent, but they became a normal part of life, now and then a skip here and there. I did see a cardiologist who ran tests, including a stress echo, but nothing showed up. Of course not, because now I know it was autonomic dysfunction related to SFN. Even further back, perhaps a year or two before the heart issues, I had soars on my toes that were unexplained, which now I know can be a symptom of SFN, and I'm willing to bet it was.

I suspected alcohol from the start and still do, but more so because of what it did to my gut, all the grain, the gluten and the high carb diet. I'm sure of it.

When I went on the diet I saw some immediate relief I think, but I can't remember as I have no notes form them. But I can recall for certain that a month or two in I had a great deal of relief and it was obvious. Now, if I have carbs, even fruit, I can feel it, and if I have grains, especially glutenous ones, the affect is obvious, both immediate and long lasting.

It's interesting you mention fungal infection: candida is possible for many who drink lots of alcohol, especially beer, so ones with lots of grain and sugars. This was what I suspected and all I knew about when I started my diet. Now I know quite a bit more from research over the last year.

Hope all that helps.



@DavidHC - i just read through your history, sounds like it came on quite quickly. Did you suspect alcohol was the cause from the beginning? i see you have found a clear connection to foods which is something i havent seen personally so far. Was it immediately obvious that your diet was so indicative of worsening symptoms, could you always see you had a reaction to particular foods the same day/ day after?

Doing a search of "aldehydes and nerve pain" i found this article, which links nerve pain an out of control fungal infection, which i thought was quite interesting...
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Old 07-10-2016, 02:30 PM   #15
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Yes, I know... some of the new information is very sobering.
Now you know why doctors don't inform themselves about this and other topics well. They have very little chemistry and drug classes in school. And they have learned to rely on salespeople for drug info, which is not good for patients, either.

If you expose yourself to the technical stuff a little each day you will learn it eventually. Not too much at one time, as you need to sleep on it to learn it well.

And yes, you can just take both methylated B12 and folate, and see what happens. It takes time to get better though, so don't expect a fast result. Neither one of these nutrients has terrible consequences like drugs do. The only big contraindication for B12 is having a condition called polycythemia vera...which is too many red blood cells. Otherwise B12 is quite benign. Just take 800mcg of the methylfolate daily as higher doses require a prescription RX.
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Old 07-11-2016, 08:01 AM   #16
JimJamJones
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Quote:
Originally Posted by mrsD View Post
Yes, I know... some of the new information is very sobering.
Now you know why doctors don't inform themselves about this and other topics well. They have very little chemistry and drug classes in school. And they have learned to rely on salespeople for drug info, which is not good for patients, either.

If you expose yourself to the technical stuff a little each day you will learn it eventually. Not too much at one time, as you need to sleep on it to learn it well.

And yes, you can just take both methylated B12 and folate, and see what happens. It takes time to get better though, so don't expect a fast result. Neither one of these nutrients has terrible consequences like drugs do. The only big contraindication for B12 is having a condition called polycythemia vera...which is too many red blood cells. Otherwise B12 is quite benign. Just take 800mcg of the methylfolate daily as higher doses require a prescription RX.

Ok, so... with some further research i managed to find this website:**,which made reading about MTHFR gene much more straight-forward, and this has helped me to understand quite a bit more about it now

On the back of this, and your advice MrsD, I have ordered some B9-methylfolate to add to my b12 methlycobalmine supplements, which i will start taking alongside the B1-benfotiamine. For the purpose of clearer testing I have decided to stop taking Alpha lipoic acid for the time being.

Alongside this regime, I have quit drinking alcohol and am currently 4 days into a ketogenic diet which i do hope to continue. Unfortunately however, the keto diet may well fall apart from next weekend when i am due to go on holiday, i will definitely not be giving in to drinking. I do still feel though, that a 1 week keto trial will be worthwhile, if for nothing more than just to test the water.

Im still awaiting the results of my celiac blood test, though feel this is very unlikely, so further dietary changes, post-keto, would be to try removing Nightshades, histamines and MSG.

I will report back to tell how i am getting on in a few weeks, i do understand that this is not a quick process though so i am not getting my hopes too high but hopefully i will have some good news.

Thanks again for all the info, everyone

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Old 07-14-2016, 02:39 PM   #17
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Quote:
Originally Posted by JimJamJones View Post

After going through multiple docs and neuros i finally found one who diagnosed me with SFPN, which seems to fit. I have had all of the blood tests available and ENMGs, which came up fine. Aside from a high B6 due to Bvitamin supplementation, which has now lowered, and also a Lyme test which i was told was high but referred only to a recent infection and probably wasnt the issue... (doc offered me antibiotics for this but i declined as he said it was very unlikely the cause and ive read about people getting bad neuropathy from the antibiotics themselves).
Lyme can cause these issues. There are people on this message board who have various types of neuropathy from Lyme and related co-infections. When I started antibiotics, I had a lessening of symptoms at about the 2 week mark and I've been getting better every month since then. You can read posts under my name if you want to learn more about my situation.

And be aware that the standard test you get at the doctor's office for Lyme is inaccurate (up to 50% of the time according to Dr. Horowitz). Many people choose to find a Lyme educated practitioner and are tested in other ways (iSpot, Igenix, Stony Brook, etc) that are more accurate especially if you've been infection for a long period of time without treatment. If i were in your shoes, I'd not cross Lyme off the list of root cause possibilities.

Dr Jaller's post about Lyme neuropathy:

LymeMD: Peripheral neuropathy: a very common Lyme problem

LymeMD: ER diagnosis


Good luck and I hope you find a cause soon!
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Old 07-16-2016, 01:16 AM   #18
LisaAnnB
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Quote:
Originally Posted by JimJamJones View Post
Thanks everyone for your speedy replies,

@Glenn, i had at one point considered the possibility of a C6/C7 radiculopathy however, as i have never had any neck pain, the symptoms are spread amongst all of my fingers and my left foot we decided that there wasnt enough evidence to warrant further testing i.e. an MRI - im a little paranoid here that doctors may just pick up on whatever they can see and attribute that to your problem leading to unnecessary surgery..


@MrsD - thanks for your valuable input! ive read so many of your replies already having been reading this forum for some time now

Regarding a journal, i have actually been keeping one for around about 3 or 4 months now, though i cant see any correlation between my symptoms and my diet whatsoever. The only thing which i can guarantee to make things worse is a day or two after drinking alcohol, the more i drink the worse it is, and also a poor nights sleep.

i had already tried going gluten and dairy free for about 3 weeks but with no change so now im starting out of the keto diet along with no alcohol. Ive yet to try the nightshade diet though or MSG, both sound like good options!

Regarding B12, i had that tested and it came in at 475pg/ml which seemed ok and my b6 was actually 800pg/ml initially but thats now down to 180. Its still high but I get the feeling b6 is actually a red herring anyways... With the MTHFR Mutation would it still apply now that the b6 levels have returned to more normal levels?

Starting last week I am now taking bentofiamine - 500mg a day, Alpha L acid - 250mg and also B12 - tablets at 5000mg just for the hell of it to see what happens Though this is all early days so i havent noticed any improvement yet. I will keep you posted.

How long would you think i need to test these diets/ supplements for to get a result? 1 week? 3 weeks? longer?


@David - Sorry to hear about your symptoms, can i ask how quickly did they spread for you from you hands/ feet to the rest of your body? Did you also notice symptoms were stronger after a night drinking? and did it make any difference if you drank things other than beer?

thanks again!

High b6 serum
Levels and neuropathy, sounds like an obvious case of b6 toxicity.
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Old 07-16-2016, 08:15 AM   #19
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Tachycardia can result from high amounts of consumed alcohol
(among other things)

Tachycardia | Fast Heart Rate

This can occur with large meals too in combination with alcohol.
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Old 07-16-2016, 12:28 PM   #20
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Yup, unfortunately had this plenty of times, too much alcohol and/or food. It's sad really. You know you're harming yourself when this happens, and yet without knowing the long-term fallout, I would do this to myself regularly, weekly.



Quote:
Originally Posted by mrsD View Post
Tachycardia can result from high amounts of consumed alcohol
(among other things)

Tachycardia | Fast Heart Rate

This can occur with large meals too in combination with alcohol.
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