brain fog going on 8 years, doctors have nothing to say

[Chadwick]

Just tried some NAG today, and actually felt MORE spaced out. I will try not to write it off just yet and see if I can pin it directly to NAG and not something else.

This site is very dense (and ironically I probably need to clear my fog before I can fully understand it), but this guy ties brain fog to the immune system and Th1 vs Th2 dominance, and says that certain supplements work better depending on which you correlate to. Sooo, if NAG makes me worse then maybe that points towards trying some supplements for Th2 dominance?
http://selfhacked.com/2014/02/23/br...plements/#Supplements_to_Reduce_Th1_Dominance

Specifically check the Supplements for Th1 and Th2 on that link, and the difference between the two here: http://selfhacked.com/2014/06/16/supplements-foods-exercise-right-type-th1-vs-th2-dominance/

 

[Chadwick]

@Chadwick — I'm out of my depth with the biochem stuff so I'll bow out. But you've got some of the smartest people in the room on your case now and lots of ideas to get to work on.

I've been coming here for about 6 months and, I can promise you, it's an education!

Good luck. Be well

Hey,
I'm open to ANY tips even if it's entirely anecdotal. I'm leaving no stone unturned, whether it's a biochemical cause or a chakra imbalance or possession haha!

 

[drob31]

Just tried some NAG today, and actually felt MORE spaced out. I will try not to write it off just yet and see if I can pin it directly to NAG and not something else.

This site is very dense (and ironically I probably need to clear my fog before I can fully understand it), but this guy ties brain fog to the immune system and Th1 vs Th2 dominance, and says that certain supplements work better depending on which you correlate to. Sooo, if NAG makes me worse then maybe that points towards trying some supplements for Th2 dominance?
http://selfhacked.com/2014/02/23/br...plements/#Supplements_to_Reduce_Th1_Dominance

Specifically check the Supplements for Th1 and Th2 on that link, and the difference between the two here: http://selfhacked.com/2014/06/16/supplements-foods-exercise-right-type-th1-vs-th2-dominance/

That's joseph cohen's site, I've spoken to him before. What he's eluding to there is technically true, and backed by peer reviewed studies, but I think allot of his recommendations are for people who are less fatigued. Certainly worth investigating, but personally I think the thyroid issue is a bigger one.

Also, if you're having adrenal issues, pregnenolone would help with that.

EDIT: actually, he even says in the second link:

"

• Low pregnenolone levels – my observations. Every client who was Th1 dominant had low pregnenlone levels. (People with Th2 dominance also likely have low pregnenolone levels.)"

 

[Chadwick]

Oh that's awesome! It's the most exhaustive site I've seen on the net regarding brain fog. I was thinking about consulting with him.

I'm not sure what else I can do with the thyroid, as all the docs said the nodule wouldn't be causing the symptoms anyways, although I'm skeptical of that. All the labs were normal, but I can try to snag the other few I didn't check for like RT3. I don't know what other adrenal issues to check either… arghh so much to keep up with!!!!

I almost bought pregnenolone today as well, but decided to try NAG first. Cohen's site says they both address Th1 dominance, so couldn't that mean that pregnenolone could make things worse too? (if in fact the NAG caused the spaciness). I haven't really tried most of the items in the Th2 list.

 

[Chadwick]

Just tried NAG again today… MUCH better! Will stop posting until I have a chance to experiment with this some more….

 

[Chriswolf]

@Chadwick

You're not alone in having a less than stellar response to B-12, I'm diagnosed CFS and my doctor determined via tests that my B-12 was high and I shouldn't take supplements for it.

I didn't get any distinct symptoms from it when my B-12 values were apparently high, it was just as if all of my existing symptoms were worse in some way.

My thyroid results were iffy, and we don't test for rt3 here so I just started taking a low dose of t3 as it's legal to acquire here, it has helped but you have to be careful with it, and I would not recommend taking it outside the care of a doctor. I was desperate, it has helped, but you have to figure out what your body needs.

As far as I can tell I just need enough to ensure my t3 receptors aren't all bunged up with rt3 and making me feel like crap. The nodule on your thyroid as somebody else had noted sounds like it could pose an issue.

I've also taken pregnenolone, it has helped in the past, however I can't take it constantly, it caused weight gain for me which is strange as I've always been kind of on the skinny side. So if you do get some, be aware that it could cause the same for you.

Another thing that has helped my fatigue and my level of mental awareness was an amino acid complex, I am quite sensitive to supplements and foods in general, and I actually took more than I should have initially, I'm assuming it's the glutamine as I took a full scoop and I felt pretty agitated twitchy from it.

Now I can tell when I've been off the amino acids for a while as a lot of symptoms get worse. Overall the amino acid complex I've been taking has helped considerably.

My girlfriend got me some biotin as apparently it's necessary to help process amino acids and I have considerable irritable bowel issues as it is.

I've just started taking it so I won't be able to tell if the biotin has helped, but I'll probably let you guys know if it helps, hopefully it can help others.

Another thing you might want to consider is getting some L-citrulline or L-citrulline/arginine combination supplement, that helped me considerably with energy/wakefulness, cognition, etc.

 

[Chadwick]

@Chadwick

You're not alone in having a less than stellar response to B-12, I'm diagnosed CFS and my doctor determined via tests that my B-12 was high and I shouldn't take supplements for it.

I didn't get any distinct symptoms from it when my B-12 values were apparently high, it was just as if all of my existing symptoms were worse in some way.

My thyroid results were iffy, and we don't test for rt3 here so I just started taking a low dose of t3 as it's legal to acquire here, it has helped but you have to be careful with it, and I would not recommend taking it outside the care of a doctor. I was desperate, it has helped, but you have to figure out what your body needs.

As far as I can tell I just need enough to ensure my t3 receptors aren't all bunged up with rt3 and making me feel like crap. The nodule on your thyroid as somebody else had noted sounds like it could pose an issue.

I've also taken pregnenolone, it has helped in the past, however I can't take it constantly, it caused weight gain for me which is strange as I've always been kind of on the skinny side. So if you do get some, be aware that it could cause the same for you.

Another thing that has helped my fatigue and my level of mental awareness was an amino acid complex, I am quite sensitive to supplements and foods in general, and I actually took more than I should have initially, I'm assuming it's the glutamine as I took a full scoop and I felt pretty agitated twitchy from it.

Now I can tell when I've been off the amino acids for a while as a lot of symptoms get worse. Overall the amino acid complex I've been taking has helped considerably.

My girlfriend got me some biotin as apparently it's necessary to help process amino acids and I have considerable irritable bowel issues as it is.

I've just started taking it so I won't be able to tell if the biotin has helped, but I'll probably let you guys know if it helps, hopefully it can help others.

Another thing you might want to consider is getting some L-citrulline or L-citrulline/arginine combination supplement, that helped me considerably with energy/wakefulness, cognition, etc.

Thanks for the info Chriswolf! Can I ask which amino acid complex you took that helped? Were you able to determine anything in particular in the complex that made the biggest impact?

I've heard good things about glutamine, as it is supposed to heal the gut, and the gut and brain are largely connected. I've tried l-arginine in the past, but it made my throat swell. I dunno if it was increasing vascularity and made my nodule expand or it was an allergic reaction, but either way I DEFINITELY laid off of that! I'll look into l-citrulline.

The nodule is suspect to me too, but again I don't really know what I can do with the thyroid at this point since all my docs dismissed the idea that it could be causing any problems? In what ways specifically are you guys thinking the nodule is contributing to the brain fog? Do you think it's a physical block, maybe limiting oxygen/blood circulating to my brain (although I think that would probably kill me?), or is it some hormonal thing that's out of whack that none of the docs caught yet?

 

[Chriswolf]

@Chadwick

I would assume the leucine and valine are helping a lot of with my muscle pain and weakness, here's an article that explains more.

http://www.dummies.com/how-to/content/building-muscle-with-isoleucine-luecine-and-valine.html

I'm just using some stuff you can get at health food store, nothing fancy at present, the brand name is Six Star, comes in a smallish canister, black and red colored packaging.

The l-carnitine malate in the complex is probably the most likely to help with cardiovascular/bloodflow issues. I do much better when my nitric oxide levels are higher, more energy, I regain a bit of that quickness of mind, I feel as if I have a heightened awareness. Somebody here actually said they were on nitro glycerine for some years and their CFS symptoms just kind of melted away for the most part, I'd love to try some myself.

I would actually try an arginine/citrulline mix if you can, assuming you don't have some HHV virus causing problems in which case arginine may not be great for you unless you're on some kind of antiviral.

If I feel I'm slipping whilst on arginine I'll bump back with a bit of lysine, which compete with one another, too much of either is not great, especially if your CFS is aggravated by some type of HHV virus, in my case likely Epstein-Barr.

I would say the glutamine in the mixture likely just gives me an extra jump start to my nervous system, it doesn't really help fix any sort of mitochondrial problems, but it is among other things, a stimulant.

I wouldn't recommend simply buying a crapload of glutamine on it's own as I would imagine it wouldn't be much better than taking a lot of any other stimulants in that respect, however in a certain quantity with other beneficial amino acids, it does seem to help, speaking of which my gut issues seem to have been less prominent since taking the amino acid complex, perhaps there is something to it ameliorating or helping those issues, what I noticed the most however was the stimulant factor, which I attribute to the glutamine as that's what it's known for.

"I've tried l-arginine in the past, but it made my throat swell."

D:

Well, either you've got an allergy to something or you've aggravated some sort of HHV virus you might have brewing, maybe try lysine and see if it helps also.

As far as the thyroid nodule I'm no expert, however according to the statement on this article, there is an implication that nodules can somehow alter the functioning of your thyroid, that being said, if it's benign, that's good news, however if your thyroid is behaving strangely your body can respond to it in inconvenient ways.

http://www.medicinenet.com/thyroid_nodules/article.htm

There are certain circumstances where you may put out a normal amount of t3 and have a certain amount converted to rt3, I'm not sure how possible it is that maybe your nodule is hyperfunctioning and your body is overzealously converting t3 to rt3. Without any actual tests however, you will know nothing through testing t3/t4 values alone, they could look pretty reasonable on paper and you could still feel like junk because rt3 will occupy pathways normally used by t3, which is just hanging out and not being fully utilized.

 

[Chadwick]

Thanks for the reply. Regarding thyroid, I know if T3 or T4 is low they give you replacement hormone, but what do they do if RT3 is high? I'll see if I can convince my current doc to test for it since they really haven't done anything extensive since I had the nodule…

Regarding arginine, I never had a flare up of HHV so that's doubtful to me… the reaction occurred within an hour of taking it too, so I suspect allergy or nodule swelling… I'd say maybe an allergy to a filler ingredient, but a few different brands produced the same results. It's so weird that my body could be allergic to an amino acid… what the hell? lol

Awesome info on the amino acid complex! Sounds like something I should check out--- I've heard about the mitochondrial function thing and really want to look into it further….

 

[drob31]

Thanks for the reply. Regarding thyroid, I know if T3 or T4 is low they give you replacement hormone, but what do they do if RT3 is high? I'll see if I can convince my current doc to test for it since they really haven't done anything extensive since I had the nodule…

Regarding arginine, I never had a flare up of HHV so that's doubtful to me… the reaction occurred within an hour of taking it too, so I suspect allergy or nodule swelling… I'd say maybe an allergy to a filler ingredient, but a few different brands produced the same results. It's so weird that my body could be allergic to an amino acid… what the hell? lol

Awesome info on the amino acid complex! Sounds like something I should check out--- I've heard about the mitochondrial function thing and really want to look into it further….

Don't be quick to rush into using thyroid hormone. Often it doesn't work because the HPA-axis isn't producing adequate amounts of cortisol at the right times. A saliva test might even look "normal" but isn't always an accurate reflection that your body is producing enough when it needs to, it could lag behind because of PVN issues, and that's where things get complicated.

RT3 can be high for a couple of reasons. Check out this thread:

http://forums.phoenixrising.me/inde...use-of-hpa-axis-pvn-issues.38922/#post-622553

13. Down-regulated 5’ deiodinase activity from elevated cortisol393 394 395 Elevated cortisol from chronic stress down-regulates the 5’ deiodinase enzyme, inhibiting the conversion of T4 to T3. In the past it was believed T4 was shunted into irreversible and inactive T3. New research shows that there is not an increase in reverse T3, but rather poor clearance of reverse T3 due to elevated cortisol. 396 397 398


That's assuming your rt3 is high--it may not be.

 

[Chadwick]

Holy crap, that is a ton of info on thyroid patterns… thanks! It's another thing I will probably have to wade through in due time lol. But yes, I wouldn't try hormone replacement on my own at all-- I'm hesitant about those kinds of things generally.

I should have probably also mentioned that the brain fog came on fairly close to (within a year) a string of really horrible sinus infections-- the first I'd ever had actually. Years later I found out I have a maxillary sinus cyst, but not large enough for docs to think much of it. I've heard that can also be related, but I think it's usually not in the maxillary sinus when it affects brain function?

 

[panckage]

@Chadwick I find a small amount of marijuana extremely helpful for brain fog. When I crash I unaware of it. It can take several days to recognize I am in the crash part of my cycle. With marijuana I am able to recognize I have crashed and initiate health behaviors to help my condition.

I use a vaporisor with a dosage of 0.1 - 0.15g

 

[Chadwick]

Hmm, I wonder if I could get a medical prescription for that. I'm planning to see a rheumatologist for CFS soon…thanks for raising that.

That actually reminds me… are there any threads on here or anyone with personal experience about reversing long term alcohol effects? While every doctor I've seen dismisses brain damage from alcohol after hearing my usage and looking at MRI scans, I'm kind of convinced that my brain never recovered from even the very first time I got drunk at 18 and think it may play a huge role. However, I did quit for two years and it didn't really help, so maybe it's not the full picture… but maybe two years isn't long enough?

 

[Chadwick]

I hope people are still around here.

I had a few other questions… I am now looking at circulatory causes of this as a possible culprit. Does anyone here know if blood clots in the right places can cause brain fog? Or anyone know if Hughes syndrome can cause all of this?? Lastly, are there any imaging tests like venograms that could point to blood flow problems that the several MRIs and CTs I've done didn't pick up?

I ask because I've never been worked up for this in particular, but lately I've noticed several family members including immediate relatives have been diagnosed with DVT (deep vein thrombosis), so I could be susceptible. I kinda think I would know if that was the problem since it seems like it has more dramatic symptoms, but since I'm still relatively young, my speculation is that I could be seeing early signs of something like this or worse?

 

[drob31]

Yeah, hughes syndrome, aka antiphospholipid syndrome can cause brain fog due to stick blood, which causes insufficient delivery of oxygen to peripherial tissues, including the brain. APS can manifest differently for different people. This is one path I have been exploring myself.

You can get a APA panel done for it, although mine was negative, and I did a cyrex autommune panel were it was "positive" so go figure. In any case your fibrinogen activity would be a good indicator of your bloods "stickiness." You can also thin it with enzymes like lumbrokinase or drugs like heparin if that is the problem.

 

[Chadwick]

Great, this is exactly what I'm looking for. I'm not sure I can convince a doctor to order the test for me not having some of the symptoms like low platelets or prolonged PTT. But I'm willing to look everywhere at this point.

I was gonna try a low-dose aspirin every day to see if it helps at all, if not with the fog at least with the lightheadedness…

What is the best way to test fibrinogen activity? What else have I not worked up that can cause brain fog?? lol

 

[Chriswolf]

Yeah, hughes syndrome, aka antiphospholipid syndrome can cause brain fog due to stick blood, which causes insufficient delivery of oxygen to peripherial tissues, including the brain. APS can manifest differently for different people. This is one path I have been exploring myself.

You can get a APA panel done for it, although mine was negative, and I did a cyrex autommune panel were it was "positive" so go figure. In any case your fibrinogen activity would be a good indicator of your bloods "stickiness." You can also thin it with enzymes like lumbrokinase or drugs like heparin if that is the problem.

Hmmm, strange that I do well on sunflower lecithin then.

Does Hughes syndrome cause sufferers to feel worse when they take phospholipids or better?

Thanks for the input.

 

[Chadwick]

I figure I would ask about my sinuses while this thread is still (kind of?) going. I would say that the brain fog started around the first time I had a series of terrible sinus infections-- I can't recall if the fog happened before or after, but I think before. But basically it started as a cold that didn't go away after 10 days, and the doctor said to come back if it doesn't go away after another week… so by the end of 2+ weeks I felt like death-- it could have easily been treated long before that point!! Anyways, that happened 2-3 times in a row, and years later I found out I have a maxillary sinus cyst. I guess it's too small for any doctors to care, but could this be causing the fog?? I haven't had any allergy problems or recurrent symptoms lately except the occasional postnasal drip.

 

[Chadwick]

Are you guys still here? I've tried taking the recommended 3 anxiety supplements (NAG, flaxseed and turmeric) and it hasn't helped. Will I just have to accept that I'll never be the same again? sigh...

 

[Maria1]

Hi @Chadwick

I'm relatively new here. My brain fog has been pretty disabling at times but has definitely improved over the last year (I got ill with ME / CFS Christmas 2012).

I don't actually know which of the things I started last year, if any, has made the difference. If I had to put money on it, I'd say it's probably a combination of all of the following, as I think the body needs to be pretty finely balanced to work, especially if the systems run on empty for a while, which mine did.

I'm listing what I do currently in case it helps you:

• ferritin- there's a study somewhere that says ferritin over 50 makes a difference in people with chronic fatigue. Mine was 7 in the year before I got ill, then hovered around 25 until I decided to keep taking the tablets and listen to certain docs. It's just passing 50 now. I take ferrous sulphate 400mg;
• vitamin c- I take 100 mg with the ferrous sulphate
• thyroxine- I was borderline hypothyroid for years before a doctor suggested treating it. I didn't know this as I never asked for the test results; I was just told it was normal. I feel better when my TH hovers just above 0. I'm considering trialling t3 but want to set it up so my doctor on board and that might not be possible;
• Selenium- taken because the thyroid websites say to!
• folate- mine shows low on lab results
• vit d3 ( I was found to be deficient despite having been supplementing for a while. I think that meant I was possibly badly depleted previously)
• b12, as folate. I take 1000mcg
• zinc
• potassium
• magnesium- I was on topirimate and amitriptyline for 5 years for chronic migraine. Now I take high dose magnesium instead and it seems to be working in reducing the migraines. I can't help wondering if this might be a big clue to other things as well as there's loads of stuff around about how wonderful magnesium is for all sorts, especially anxiety.

And when I say improved I would say I'm now at around 40 % of my old self rather than maybe 15. It's still pretty rubbish but I definitely feel an upward curve. There are times when I feel like my brain actually is working normally, as if everything just connects properly again. It's great when that happens, but frustrating when it disappears again.

I don't think brain fog is anything to do with anxiety. But I have described it to people as how my brain has felt at moments of extreme stress, when it just empties and can't work properly. I feel as though it's like the blood or the oxygen or something vital isn't getting through to do all the fine cognitive stuff properly.

Hope this makes sense. I don't find this place or posting easy- brain fog, amongst other things!

Hope you find some answers