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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Deplin so confused

SOC

Senior Member
Messages
7,849
Thanks @SOC

I was told I had CFS - in addition to 5 million other things. My fatigue post meds has improved. I am much better and never nap anymore. I think getting off meds, getting my vit D from 11 to over 80 and overhauling my diet has done wonders.

I am mainly interested in all of this from an anxiety/ocd/depression angle.

Thanks

@caledonia
Just for clarity -- do you know by what definition you were diagnosed? Sometimes GPs will diagnose "CFS" for depression-related fatigue, which is not really correct. If your fatigue improved with psychiatric meds or (confusingly) improved after stopping psychiatric meds, then your fatigue is more likely related to the depression or the meds than it is to the disease ME/CFS. If you don't have PEM/PENE, you probably don't have ME/CFS (thank goodness!) Trust me, you do NOT want ME/CFS. :) You don't even want CFS in your medical record if you don't have it. Docs tend to stop listening as soon as they see that diagnosis.

It sounds like you have done a lot of good for yourself so far. Improving diet and getting that vit D up can be a big help for anyone. Good luck on your path to improved health!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
GABA does not normally pass through the blood-brain barrier, so in most people GABA will have no effects in the brain at all. If GABA does have an anti-anxiety, calming effect, it is because you have a leaky blood-brain barrier. See here.
That's so interesting. I've been using GABA for many years now. It works brilliantly, I know when I need more. Guess that defines me as having leaky BBB...ah, having read the link, I've also got Hashimoto's.... GABA also balances excess glutamate, which is an excitotoxin. You could easily be exposed to excitotoxins in your Chinese and other fast foods.

@anxiousguy, Glycine also helps calm CNS. And from reading another thread re Take these Supps for Calming (actual name??), I've just added arginine, another amino that helps calming. My calming started when I eliminated gluten and dairy. The next big gains were from getting the proper minerals, which for me were counteracting pyroluria, then MTHFR. Also, for some of us, w/ genetic predisposition to rapidly cycling neurotransmitters, low dose lithium orotate. I've been lucky w/ adding folate, which hasn't contributed to anxiety. Can't think of other things in this moment. cheers, ahmo
 
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caledonia

Senior Member
@caledonia
I have been feeling better the last couple days and stopped the Deplin yesterday. I don't know if this is attributed to the Deplin or the fact that mentally I have decided to simplify/streamline my medical approach and all that that entails. If the Deplin was "working" will I notice it by not feeling as "happy" going forward. Should I still suspend taking it?

If the Deplin was working (making you feel happier) and you stopped it, you should gradually go back to feeling less happy again. You could repeat the experiment again to make sure it's not something else. This is where it helps to keep a symptom journal and take notes on when you start and stop pills and how you're feeling over time.

I don't know if you should stop. If it was me, I would experiment with lower doses of methylfolate first. The reason is that a large dose of methylfolate can either cause:

1) overmethylation, which will make you feel worse
2) methyl trapping, which may make you feel better at first, then apparently "stop working" or cause you to feel worse because it's stopped methylation and/or depleted your B12, leaving you in an even worse methylation situation
3) or you could luck out and be one of the few who require mega doses of methylfolate to get a response, and all will be well.

There can be a honeymoon period, where at first you feel good, then you start feeling really bad. So it's kind of a crapshoot as to whether it will be good for you or not. Your psychiatrist doesn't know this or he wouldn't have prescribed Deplin.

Note: even lower doses of methylfolate can cause this. It just depends on how sensitive you are. That's why I tell people to Start Low and Go Slow, and I wrote the document linked in my signature. Granted, I'm used to dealing with ME/CFS patients who are very sensitive. If you have good general health besides mental health issues, you might be ok. Or not.

23andme doesn't do that testing.

Sorry, I don't understand the question/statement.

I tried to upload my medical records but the file is too large. How can I get it to you? There are methylation cofactors and neurotransmitters and precursor results on there.

I will contact you backchannel so we can figure out how I can look at your records.

The Dr who designed the test and did a phone consult had me taking folic acid. Dr Sherry Rogers - she is retired. She does consults and writes books now.

I'm familiar with Sherry Rogers and have read several of her books. I thought she was mainly an environmental medicine specialist. Do you have chemical sensitivities, or toxic enviromental exposures?

It's been found that the "folic acid" form of folate is not well absorbed by those with MTHFR mutations and can actually block absorption of methylfolate and also float around in the bloodstream and possibly cause cancer. So it was the right idea, but the wrong form - not good.

I am confused by B vitamins in general. Are they all water soluble? Should I be taking a complex? Keep up on the B12 shots even if I am not taking Deplin now? How much? How often? How often should I retest. I know that you said 583 was suboptimal. What should I aim for?

I believe B vitamins are all water soluble. Technically, you would want to be taking the other B vitamins along with folate and B12 as they all work together. Some B complexes are better than others. You may want to only take small amounts.

I was a little confused about the COMT mutation. I don't know what that is or if I have been tested for it.

COMT = Catechol–O–Methyl Transferase. It degrades dopamine. If you have a COMT mutation, you will degrade dopamine slowly. This will cause an excess of free methyl groups. If you add methylfolate and methylcobalamin on top of this, it can cause too many methyl groups, and thus mood swings (panic attacks and bipolar symptoms). That's why I would suggest caution on the methylfolate 1000mcg injections, until you know if you have this.

You can find out if you are COMT+ from the 23andme test or Yasko's SNP test.

You also said "
The main thing with MTHFR A1298C is that your folate will be running a little slow, I think about 20% for one mutation? You likely have other mutations adding to the effect, and also the aluminum. Wow, I just looked at Heartfixer who says MTHFR A1298C plus CBS and BHMT will lead to a drain on BH4 and lowered neurotransmitter production. Aluminum will add to the problem. Boy, this really sounds like you!

Was my aluminum that high? I am glad I am on a non aluminum deodorant. I don't know where it could be coming from? Is that a high ammount of aluminum? What is CBS and BHMT? Why does that sound like me?

I'm not sure if your aluminum is high because you didn't state what the threshold number for "high" is. But it did sound higher than all your other metals. I'm glad you're on a non-aluminum deodorant too. Actually, I was going to ask you if you had a known exposure from work or hobbies.

This website says you can get aluminum from food, drinking water, some medications, and cooking and storing food in aluminum cookware. There is also aluminum in vaccines. If you have MTHFR and other methylation cycle or detoxification mutations, you'll have trouble detoxifying metals, such as aluminum.

CBS and BHMT. Too complicated to explain here, but low BH4 and neurotransmitters can cause mental health issues. The higher aluminum level can indicate problems detoxifying aluminum, and aluminum's presence will lower the ability detoxify aluminum even more - a vicious cycle, that can keep you trapped into having mental health problems and not be able to recover.

I have radically altered my diet. I assume that low carbs means crappy carbs. I eat eggs and an apple for breakfast. Almonds for a snack and half chicken/half broccolli or veggies for lunch. Generally an ok dinner. I've cut out ALL fast food and 90% of processed food. I do occaissonally indulge in an omellete at the diner or chinese/something fun once or twice a week. I do drink a handful of decaf coffees a week in addition to a glass a wine on the weekend, but no more iced tea and mostly just drink water and chamomille tea.

Diet sounds pretty good. The Chinese could be a culprit for anxiety, with MSG.

Should I just try taking some GABA? Is there any detriment?

You don't know until you try it, unless you want to learn self muscle testing. It's not 100% accurate, but pretty good. I use it all the time. It's helped me avoid lots of bad reactions.

I've heard of at least one person who had a contradictory reaction to GABA - it's supposed to be calming, but this person got very anxious from it. This person has extreme chemical sensitivities. So I think for most people it should be ok. But to be on the safe side, I would try like 1/8 of a pill to start. That way, if you do have a problem, it will only be 1/8 as bad.

This is the only doctor on the mthfr support site near me is http://www.nycfuturedocs.com/nycfuturedocs/ContactUs/index.cfm
I left a message for them.

Sounds like a good step. Michael Gruttadauria has done a couple of BlogTalk Radio shows for MTHFRsupport - the last two shows - Nov. and Dec. 2013. Might be good to listen and see if you like him.

My homocysteine was 936 nmol/mL in the Spring and 13.5 Umol/L in the Fall. I notice that those units of measurement are different.

I looked it up. That's elevated.

Again, what does the a1298c mutation mean in general for my health. Is it just methylation or other things too? What problems can it potentially cause me?
It did say on my test (which I don't understand) "hyperhomocysteinemia is a risk factor for arterial disease and venous thrombosis. Homocysteine levels are affected by nutritional and genetic factors. Since MTHFR is involved in Methylation of homocysteine to methionine, individuals with MTHFR gene mutations that reduce enzsyme activity may develop hyperhomocystemia and thus be at elevated risk for vasuclar disease.

The analysis is telling you it's elevated and the possible repercussions. There are a wide range of problems MTHFR A1298C can cause, including the elevated homocysteine. Technically, a CBS mutation would cause lower homocysteine, which would cancel out my earlier hypothesis, but I've heard of people with CBS and high homocysteine too.

Has your doc mentioned the high homocysteine?

The good news is, methylation treatment should not only fix your mental health issues, but also the high homocysteine, aluminum buildup and any other problems caused by poor methylation.
 

caledonia

Senior Member
I hope you all will excuse me if I'm throwing a wrench in the discussion here --

I don't see that @anxiousguy has given any indication that he has ME/CFS. We should probably be cautious about suggesting treatments for ME/CFS when his issues may be something entirely different. What applies to us may not apply to him.

That said, a lot of the discussion in this thread is also related to OCD, anxiety, and depression and so is probably helpful. I'm just suggesting we make sure we're keeping our eyes and efforts on the right target. :)

@SOC Actually even if he didn't have ME/CFS, methylation treatment would be appropriate for mental health issues.

This is a great article which explains the connection:
http://metabolichealing.com/michael-s-blog/mental-illness-or-methylation-mutation/

Methylation treatment is appropriate for about 30 diseases. You can see the list on my first Methylation Made Easy video (linked in my signature).
 

Hip

Senior Member
Messages
17,874
Well being that this disease is called Myalgic Encephalomyelitis, which translates out to brain inflammation, it would seem to me to make sense that GABA would be able to cross the BBB at this point.

Something that confuses me is how it's called a neurotransmitter yet it doesn't normally cross the BBB. Could you explain this please @Hip ?

Neurotransmitters are used to transmit messages. They are generally released by one neuron, and picked up (detected) by adjacent neurons, and thus have a short range (with the exception of nitric oxide).

You wouldn't really want neurotransmitters to cross the blood-brain barrier, otherwise neurotransmitters in the foods we eat will get into the blood, cross the blood-brain barrier, and then disturb the functioning of the brain.
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Neurotransmitters are used to transmit messages. They are generally released by one neuron, and picked up (detected) by adjacent neurons, and thus have a short range (with the exception of nitric oxide).

You wouldn't really want neurotransmitters to cross the blood-brain barrier, otherwise neurotransmitters in the foods we eat will get into the blood, cross the blood-brain barrier, and then disturb the functioning of the brain.


I'm getting confused. Are you saying that neurotransmitters are not located in the brain (among a lot of other places, ie The Gut)?
 

Hip

Senior Member
Messages
17,874
I'm getting confused. Are you saying that neurotransmitters are not located in the brain (among a lot of other places, ie The Gut)?

Neurons (nerve cells) are located in the brain, in the nerves, and in the gut. Neurons can communicate with each other by sending chemicals signals to each other. Those chemicals are neurotransmitters.
 
Messages
84
@SOC

I don't put much; if any weight in my "CFS diagnosis". It was a convenient catch all "diagnosis" when incompetent doctor couldn't find why I was tired. My fatigue is almost non existent now. It improved AFTER getting off the meds which makes sense as one of the main Side Effects of anti depressants is fatigue.

I don't know what PEM/PENE is.

Thanks
 
Messages
84
@caledonia

Thanks again.

I think that I am in good health. I don’t know if I have any chemical sensitivities or toxic environmental exposure. The reason that I saw Sherry Rogers was a suggestion from another dr and the cardio ion test from metametrix states it helps with mental disorders.

Re: 23andme – I saw a message on their website that looked like the feds shut it down. Another poster saw this too. Do they have more than one test?I am sort of on the fence about whether to order it. Yes, it is only 99 bucks, but I am looking into seeing a doctor as well. Michael Gruttadauria never called or e-mailed back so I put a call into another methylation doctor in CT. Unfortunately it is a 5 hour drive :/ Should I do the test or will these docs most likely test for the COMT. Does the fact that I am in NY state effect any of this? I know that Sherry said NYS was corrupt and removes a lot of stuff from tests and that I should get an out of state doctor.

Just so we are clear though, wait on taking any more methylcobalamin until we get more information, correct?

As far as the aluminum, it looks like it is in range in both tests although the once doctor circled it. He wanted me to do chelation, but he has a reputation for pushing all of these therapies on everyone.

This Chinese place says no msg (whether that is true…)

I don’t really have a doctor now as I am past dealing with regular doctors. The last 2 docs I worked with were sherry rogers (at 600 bucks a call though I couldn’t sustain it). The only thing that she said about Homocysteine was that it was a measure that the body was aging rapidly and would be coming down as I took all of the vitamins she suggested. The other didn’t mention it but put a checkmark next to it.

As an aside, both my elaborate tests showed homocysteine and aluminum to be in ok range according to test.

Once I get all of this locked down, am I going to have to “do this” forever? Constantly see a methylation dr and get more and more tests?

All the usual disclaimers btw, I know you are not my doctor etc etc :)

Thanks again so much
 
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caledonia

Senior Member
@caledonia
Re: 23andme – I saw a message on their website that looked like the feds shut it down. Another poster saw this too. Do they have more than one test?I am sort of on the fence about whether to order it. Yes, it is only 99 bucks, but I am looking into seeing a doctor as well.

They're not shut down. The FDA caused them to remove their health interpretations, that's all. You can still get your genetic data, ancestry data and so forth. For our purposes, it doesn't matter. We take the genetic info and do our own interpretation. Their health info wasn't all that great anyway.

Michael Gruttadauria never called or e-mailed back so I put a call into another methylation doctor in CT. Unfortunately it is a 5 hour drive :/ Should I do the test or will these docs most likely test for the COMT. Does the fact that I am in NY state effect any of this? I know that Sherry said NYS was corrupt and removes a lot of stuff from tests and that I should get an out of state doctor.

You can wait and see what the doc recommends, if you want. But there are only two ways to test the whole methylation cycle - Yasko's test (the original - $500) and 23andme at $99. 23andme doesn't have every single last gene that Yasko's does, but it's close enough.

Yes, NYS seems to be very weird about natural/alternative medicine. Many times you'll see on tests that it's available in all states except NY. In fact, that might even be an issue for 23andme, not sure. That would be good to check up on.

Just so we are clear though, wait on taking any more methylcobalamin until we get more information, correct?

Yes, hold off for now.

As far as the aluminum, it looks like it is in range in both tests although the once doctor circled it. He wanted me to do chelation, but he has a reputation for pushing all of these therapies on everyone.

As I mentioned on the info I sent you on your lab tests, a blood test for metals won't tell you what's stored away in your body. You might want to consider doing provoked urine test and possibly a hair metal test. It's looking like mercury is more of an issue than aluminum anyway.

Once I get all of this locked down, am I going to have to “do this” forever? Constantly see a methylation dr and get more and more tests?

The short answer is no.

I think just the two tests I suggested to get started (23andme, and metal test, both around $100). The gene test is a one time thing. Your genes don't change. Maybe do a followup on metals, neurotransmitters, LDL-P, A1C after 6 months or so. Neurotransmitters is available as a standalone test, much cheaper.

Doing methylation treatment will automatically chelate out any metals, and also support mental and physical health.

After you get in balance, you should be able to maintain with just a few supps.
 
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