Need some advice!

[idlehnds]

Hello everyone,

My name is Daniel and this is the first forums I have ever written on. About 3 years ago I started having bad acid reflux which lead me to a naturopath/MD after visiting my PCP which was useless. I was able to get my acid reflux in order by changing my diet and using certian digestive enzymes, however I still had brain fog and slight dizziness. My naturopath (NP) decided to get some tests done and I was super low in testosterone, super duper higher in folic acid (i think my test said >19.9), high in homeystine (14.5), and low in Vitamin D (around 35). She gave me Folapro, and vitamin d3 5000 hoping it would fix my issues.

I started to have issues with my hands not working, and some sore tense muscles (nothing too horrible) but definitely noticed some changes. This happened for about a 2-3 weeks then I felt pretty good for about a month. During this time I started 500 Methyl B12 and 1/4 tablet of adeno B12 and a b-complex from pure encapsulations. It seems after trying this all hell went loose and started to get a bunch of different symptoms. Like tingling all over body, hands not working again, stiff, back pain, swollen lymph nodes, a cold however, I noticed some improvements like better mood and a little better sleep. About a week ago I had a little too much wine and I felt so bad the next day and it seems like thats when alot of the cold symptoms and swollen/pain lymp nodes in neck started to bother me. My mornings are horrible and the nights seem to be not that good. The middle of the day is okay.

My doctor originally just wanted me to try the adeno b12, folapro, magnesium and vitamin d3. Instead I added a bunch of stuff and since adding the Mb12 it seems like I haven't been doing good. Also one other thing my B12 on my blood tests is always on the higher end between like 900-1100. I have an issue with starting new supplements or wanted to try them to see how they work. I told myself that from now on I am only going to listen to what my NP wants me to do and not try and self diagnose my self.

Anyways, I feel I am going crazy and I have another doctor appt in about 2 weeks but I wanted to start my journey here and see if I can get support and possibly help other people in the future if I can myself taken care of.

BTW, I have not done any 23 and me DNA testing. I think this all started because I had high folic acid and high homocystine with low testosterone.

I look forward to anyone wanted to talk.

 

[taniaaust1]

My naturopath (NP) decided to get some tests done and I was super low in testosterone, super duper higher in folic acid (i think my test said >19.9), high in homeystine (14.5),

"Screening for MTHFR Mutations
If you fall under any of the following categories, screening for potential MTHFR mutation may be considered.

• Patients suffering from several mental conditions such as depression, anxiety, schizophrenia.
• Relatives of someone with known MTHFR mutations.
• Increased folate, homocysteine, cobalamin levels for no apparent reason. "

https://www.drlam.com/blog/mthfr-part-1/5452/

With MTHFR one cant convert folate to its active usable form and the homocysteine gets high. It may be good idea to get tested for the main MTHFR mutations as its extremely likely you are dealign with this and if so treatment for this needs to be life long.

My daughter was born with similar to spina bifida as I didnt know I had this mutation and was taking the wrong form of folate during pregnancy which my body was unable to convert. It also carries a higher risk of other things including miscarriages which my be preventable by taking baby asprin as well as other supplements if pregnant.

Anyway, I think its important to know if one has this due to the issues it can cause.

The first so called MTHFR specialist I saw thought he knew far more about this mutation then it turned out he did so I was on wrong treatment for this for several years with no help to it at all (realised he was trying to treat me wrongly after reading the MTHFR website recommendations). I finally found a good MTHFR specialist and was helped some for this.

 

[idlehnds]

"Screening for MTHFR Mutations
If you fall under any of the following categories, screening for potential MTHFR mutation may be considered.

• Patients suffering from several mental conditions such as depression, anxiety, schizophrenia.
• Relatives of someone with known MTHFR mutations.
• Increased folate, homocysteine, cobalamin levels for no apparent reason. "

https://www.drlam.com/blog/mthfr-part-1/5452/

With MTHFR one cant convert folate to its active usable form and the homocysteine gets high. It may be good idea to get tested for the main MTHFR mutations as its extremely likely you are dealign with this and if so treatment for this needs to be life long.

My daughter was born with similar to spina bifida as I didnt know I had this mutation and was taking the wrong form of folate during pregnancy which my body was unable to convert. It also carries a higher risk of other things including miscarriages which my be preventable by taking baby asprin as well as other supplements if pregnant.

Anyway, I think its important to know if one has this due to the issues it can cause.

The first so called MTHFR specialist I saw thought he knew far more about this mutation then it turned out he did so I was on wrong treatment for this for several years with no help to it at all (realised he was trying to treat me wrongly after reading the MTHFR website recommendations). I finally found a good MTHFR specialist and was helped some for this.

Great. I read the article! Thank you. I guess thats why she has me on folapro which is 800mcg of folate. I only had brain fog/ dizziness before but now it seems like I have more issues. I probably should do the genetic testing to find out about MTHFR.

 

[taniaaust1]

She gave me Folapro, and vitamin d3 5000 hoping it would fix my issues.

I started to have issues with my hands not working, and some sore tense muscles (nothing too horrible) but definitely noticed some changes.

http://mthfr.net/methylfolate-side-effects/2012/03/01/ may of been a little too much at first but your body then adjusted too that.

 

[taniaaust1]

Great. I read the article! Thank you. I guess thats why she has me on folapro which is 800mcg of folate.

its an active folate form if Im remembering correctly so I suspects she's strongly aware that you probably have a MTHFR mutation. She sounds more knowable about all this then my first MTHFR specialist was..

 

[idlehnds]

its an active folate form if Im remembering correctly so I suspects she's strongly aware that you probably have a MTHFR mutation. She sounds more knowable about all this then my first MTHFR specialist was..

She absolutely is. She was trying to explain it to me but I didnt know anything about it until coming on here and reading the forums and going on www.mthfr.net. I feel kinda like I have gotten worse then better. Do you think I should try to go to 400mcg of folapro instead of the 800. and just a 1/4 of adeno b12 from seeking health and see what happens? I drink coconut water thinking it might be potassium but I am not so sure.

 

[taniaaust1]

She absolutely is. She was trying to explain it to me but I didnt know anything about it until coming on here and reading the forums and going on www.mthfr.net. I feel kinda like I have gotten worse then better. Do you think I should try to go to 400mcg of folapro instead of the 800. and just a 1/4 of adeno b12 from seeking health and see what happens? I drink coconut water thinking it might be potassium but I am not so sure.

Im not expert in methylation so couldnt advise (this is all part of the methylation cycle). I dont know if the founder of the MTHFR consults people or not online or you cant find out there what you'd best be doing by just reading that website....actually first you probably need to know for sure if you have this or not.

There are a few on this website which may be possibly able to give some advice on what may be best trying to change.

 

[Vanessa_M]

Hi Daniel,
Did you start on all of those B vitamins on your own, or were they recommended? It sounds like you were adding a lot of supplements in on your own, which is not a good idea. If you want to look into the whole Methylation thing, it is probably a good idea to find a practitioner in your local area who is well versed, and has a lot of experience. Though I am not sure whether it actually does help people with CFS, but certainly does with other conditions (mental illnesses in particular). You can look at the work of Dr. William Walsh, Dr. Albert Mensah, or Sami G online for more information too. But don't do the self-diagnosis thing, or try to interpret 23andMe test results on your own. I notice that that approach is getting a lot of people into a BIG mess. Also you mentioned your B vitamin levels were testing high - if you are supplementing it will come up high, or even out of range. Doesn't necessarily mean anything.

 

[alicec]

High blood folate and B12 could mean functional deficiencies, ie the vitamins are accumulating in the blood and not being taken up into cells.

High homocysteine tends to confirm this (there are other tests you could have to really nail it) since it is the substrate for the methionine synthase enzyme which uses both folate and B12 as cofactors. Homocysteine will accumulate when the enzyme is not functioning well.

There can be many reasons for this enzyme to become sluggish. Genetic factors may make a contribution, including some SNPs on the MTHFR enzyme referred to above. This enzyme recycles folate, making sure it is in the methylfolate form required by the methionine synthase enzyme.

You may have SNPs which slow this enzyme, or others in the pathway, but not necessarily.

So your results do suggest supplementation with methylfolate and both active B12s might be helpful.

These active vitamins can be very potent and many people are very sensitive to them. Your reactions suggest to me that you just started with too much.

Here is a recent post I made which summarises peoples experiences on PR with these active vitamins and making some suggestions for how to proceed with them.

 

[idlehnds]

Everyone,

Thank you so much for your help.. I am been reading through all this information. It looks like my symptoms right now are fitting into group 3 of fredds symptoms list. Which I believe he says is a Induced and/or Paradoxical Folate deficiency or insufficiency.

Now I just need to figure out how to fix it. I am not sure if this means increasing my folate or not.

 

[idlehnds]

Not sure if anyone is following this thread anymore. Just a little update tho...

I took a pure encapsulations adenosyl hydroxy b12 and had the "brightening" that I believe Fredd calls it. It gave me super energy and clarity that I havent experienced in a long time. Can anyone elaborate what exactly this means. Is this a good sign? After about 4 hours it seems to have let up and I went back to the way I was. It seems like I tolerated that much better then Methyl b12. I