BRAIN FOG: What has helped?

[Hysterical Woman]

Freddd/zinc

Hi Weldman,

Currently I'm taking Country Life 50mg Zinc.

• Vegetarian
• Target Mins
• Dietary Supplement
• Kosher

Target-Mins are complexed with specific carriers for optimum mineral transport. Zinc (as zinc citrate, histidinate, picolinate, alpha-ketoglutarate, aspartate http://www.iherb.com/Country-Life-Zinc-50mg-180-Tablets/6385?at=0

I can't say that I have ever noticed any difference from one brand or kind of zinc to another. I also get 15mg of zinc a day from the Calcium Citrate/magnesium/minerals I take from Costco Kirtland.

Hi Freddd,

Thanks for giving the information. Are you concerned about taking zinc aspartate? I have read that minerals in aspartate form can break down into the neurotransmitter aspartic acid, which without being bound to other amino acides is neurotoxic. Sometimes there just seem to be tradeoffs since if you dig deeply enough you can come up with something that appears negative in many supplements/medications.

And thanks for saying that you haven't noticed any real difference between one brand of zinc or another. I am going to include a link I came across where this doctor discusses why you need ionic zinc. He also mentions research regarding "zinc fingers". This term was used in a recent research article that was posted on another thread. The information on the link looks interesting, but they are also trying to sell you the ionic zinc on their site - always makes it difficult to separate the truth from a sales pitch.

Thanks again for all of the work you have done in your research.

http://www.ionicmagnesium.com/zinc.html

Take care,

 

[garcia]

Hi Klutzo,
I agree with you that we all have different tolerances to glutamine, and its an essential amino acid which has lots of beneficial uses in the body. So if its helping you then that is great.

However the glutamate you get from glutamine is the bad substance people like Cheney talk about. The reaction I get to pure gluatmine is exactly the same reaction I get to MSG. The article you linked to is misleading since it seems to imply because MSG is mono-sodium glutamate, therefore glutamate must be safe. However this isn't true as it is the glutamate bit of MSG which is problematic. There are glutamate receptors in the brain, not MSG receptors, and it is these which glumatate acts upon.

Its true that in theory glutamine can also increase GABA and in theory this can counteract glutamine. This is probably why most healthy people can tolerate glutamine ok (and probalby why you can too). The problem is in practice in many PWCs there is a bias towards glutamate production (or perhaps a glutamate sensitivity) which means too much glutamine converts into glutamate. So its something people should watch out for if supplementing for the first time.

 

[Sing]

Cheney and Klonopin

Klutzo, do you or anyone know if Cheney still recommends Klonopin? Also Doxepin and Magnesium Glycinate, as mentioned in the ProHealth article from Oct. 2001?

I take Neurontin, actually the generic Gabapentin, and it helps definitely, but my sensitivity to stimulation is growing, and I wonder if my brain has been trying to over-ride it? So that, in other words, I am going backwards. Well, that is another question. The brain seems to like its default patterns, even if they aren't great, and try to compensate for what we regularly put into the body to restore its status quo.

Cecelia

 

[klutzo]

Cheney's Chameleon Act

Hi Cecelia,
Dr. Cheney does seem to change his mind a lot about things, doesn't he? I don't know the answer to your question, unfortunately. I have not seen anything recent by Cheney on this subject.

I can give you my anecdotal experience from running a support group for ten years, a call-in help line for four years, and my own personal experience.

Overwhelmingly, support group members said Klonopin was T.H.E. drug that helped them the most with this illness, whether their official dx was FMS or CFS. Many mentioned that they could put a .5 tablet under their tongue and then be able to shop at places like Walmart without being overstimulated.
As far as developing a tolerance, this is a dependency producing drug, so that can be expected. I take Xanax instead, since Klonopin supresses my respirations. I have had to increase the dose slightly twice in the 24 yrs. I've taken it, due to tolerance withdrawl. I still take a low dose, but I only get away with that by avoiding more and more things that overstimulate me.
Also, maybe this is due to the illness progressing. I have the same problem as you do, ie. my overstimulation problem is getting much worse in recent years. Yet I also find that the more I avoid things that overstimulate me, the worse it affects me when I must put myself in such a situation. (As an aside, this fits in with the amygdala theory).

Most people also chose either magnesium or B vitamins as the supplement that helps the most. I could not function at all without Mg. Before taking it, I had arterial spasms that would bring me to my knees in cold weather, constant palpitations, and constipation from my other heart and stomach drugs.
I personally found no benefit from the malate form of Mg, but I did notice something curious in my support group. Those few who said they did get benefit from malate were all diagnosed with CFS. Since the majority of members were diagnosed with FMS, I thought this was interesting. I am still confused on whether the two are different illnesses, and am open to having my mind changed. The glycinate form is hard to find and expensive. I think ProHealth has it. I have not tried it and never knew anyone who did. I take the citrate form, since I suspect I have low stomach acid, but can't tolerate HCL supps.

Doxepin seemed to help a lot of people with sleep, but primarily in small doses and preferrably in liquid form, so dosage could easily be changed. It also packed on the pounds for some of us, but did not affect others. I stopped taking it after it put 9 lbs. on me in only 2 weeks. I no longer take any drugs in this class, preferring to use high dose L-tryptophan for my secondary depression. (Before someone asks why I don't use the much stronger 5-HTP, it is because it is contraindicated with high blood pressure, as I found out the hard way!)

If you or anyone else finds anything recent from Dr. Cheney on these things, I would like to see it. Sorry I could not be of more help.

klutzo

 

[Hysterical Woman]

Cecelia/Cheney

Klutzo, do you or anyone know if Cheney still recommends Klonopin? Also Doxepin and Magnesium Glycinate, as mentioned in the ProHealth article from Oct. 2001?



Cecelia

Hi Cecelia,

I know that Dr. Cheney still recommends the magnesium glycinate. I have a friend who sees him and she buys it several bottles at once altho I don't know what source she uses. If you search at thefind.com you can get some pretty good prices for it (klutzo have you tried that?). Cheney recommends the Douglas Lab brands (I believe it usually comes is 100 mg tablets) and he say you can take up to 6 day.

My friend was kind enough to pass a couple of bottles on to me and encouraged me to take it. I wish I had started it sooner, it has made an amazing difference to me for sleep and pain. I have written on other threads that I have been able to reduce the elavil I have taken for 17 years for sleep/pain from 30 mg down to 5 mg since building up some magnesium in my system. However, I also need to state that I believe I have suffered from magnesium deficiency for years before I came down with CFS.

The magnesium glycinate has helped me in other ways in addition to the pain/sleep and muscle spasms. I would love to tell you that it has "cured" or is curing my CFS but I can't say such a thing - I wish I could. Keep in mind that it can take up to a year to replenish mg levels if you have been deficient for a long time. I started mine in March of this year. I have read that the EXAtest can help determine if you have mineral deficiencies.

Anyone considering taking magnesium probably needs to start slowly to make sure it doesn't cause bowel problems. Some types of magnesium are more bio-available than others. People with kidney disease, myasthenia gravis, or extremely slow heart rate should not take magnesium without supervision of a doctor.

Good Luck

 

[Freddd]

METHYLB12 DEFICIENCY causes:
Hyper-reactive neurology.
Sensitivity to glutamate toxicity.
Suspected sensitivity to aspartic acid toxicity.
Overstimulation from sensory input.
Chemical hypersensitivity.
Brisk reflexes.
Missing reflexes.
Tight muscles.
Frequent uncontrolable muscle spasms.
Fasiculations.
Llermite's
hallucinations,
paresthesias,
pain,
numbness,
clumsiness
lack of balance,
ataxia,
mood changes,
personality changes,
anxiety,
sleep disorders of many varieties,
neuropsyc symptoms of all varieties,
psychosis


I took Dilantin, Lorazapam and Valium for 13+ years to control some of these things instead of Neurontin, Klonopin, Doxepin, Xanax, Tegretal and Lyrica etc.

Methylb12 causes the nervous system to normalize and no longer need these things.

My hypotheical explanation over what happens is that as the signal strength of the nerves decreases with mb12 deficiency the body turns up the reactivity to smaller and smaller signals until it reacts to the noise of the nervous system and just about any stimulous. Mb12 turns up the signal strength to normal allowing the body to down regulate it's reactiveness, but that takes some time. It took about 9 months for my nervous system to heal and readjust to the point that I was able to taper the Dilantin and the benzos becasue they were no longer needed.

In addition the mb12 protects the nervous system directly from all sorts of toxic effects from various things, the number known increasing each year as they study more and more toxins in that regard.

 

[klutzo]

Mg blood testing

Hi Maxine,
Thanks for the info on where to find glycinate. I will look at it.

I just want to comment on the testing. I had the red blood cell intracellular magnesium testing done, since the plain serum Mg level is so useless. Imagine my amazement when my results came back above the top of normal range!

Yet I still feel it immediately if I dont take Mg daily. In fact, we take every Sunday off from taking supplements at our house to give our bodies and wallets a rest, but the one supp. I take even on Sunday is Mg. As a result, I wonder how much those blood tests are worth.

Someone at LymeNet told me that Mg needs to be tested from a tissue sample....good luck getting a doctor to order that one, or ins. to pay for it. I am not even going to try. I am afraid of pushing doctors now, esp. since doing that recently resulted in my being fired by our PCP, and it took us 5 new PCPs to find one who would prescribe our controlled drugs. We were treated like junkies who crawled out of a gutter by most of the docs we saw, and we are senior citizens taking tiny doses of those drugs.

klutzo

 

[Freddd]

Hi Freddd,

Thanks for giving the information. Are you concerned about taking zinc aspartate? I have read that minerals in aspartate form can break down into the neurotransmitter aspartic acid, which without being bound to other amino acides is neurotoxic. Sometimes there just seem to be tradeoffs since if you dig deeply enough you can come up with something that appears negative in many supplements/medications.

And thanks for saying that you haven't noticed any real difference between one brand of zinc or another. I am going to include a link I came across where this doctor discusses why you need ionic zinc. He also mentions research regarding "zinc fingers". This term was used in a recent research article that was posted on another thread. The information on the link looks interesting, but they are also trying to sell you the ionic zinc on their site - always makes it difficult to separate the truth from a sales pitch.

Thanks again for all of the work you have done in your research.

http://www.ionicmagnesium.com/zinc.html

Take care,

Hi Weldman,
See the previous post as regards toxicity. I have found this zinc very effective but haven't noticed any lack of effectiveness from a chelated zinc from another maker with different forms of zinc.

 

[klutzo]

MB12 and benzos

Hi Fred,
I can testify that although I am taking smaller doses than what you recommend, since starting the MB12 I have cut my benzo dosage by 1/3 without withdrawl symptoms. I've been on them for 24 ys. and before this even cutting 1/4 of a pill would produce intolerable withdrawl.

klutzo

 

[Hysterical Woman]

Klutzo/Testing

Hi Maxine,
Thanks for the info on where to find glycinate. I will look at it.

I just want to comment on the testing. I had the red blood cell intracellular magnesium testing done, since the plain serum Mg level is so useless. Imagine my amazement when my results came back above the top of normal range!

Yet I still feel it immediately if I dont take Mg daily. In fact, we take every Sunday off from taking supplements at our house to give our bodies and wallets a rest, but the one supp. I take even on Sunday is Mg. As a result, I wonder how much those blood tests are worth.

Someone at LymeNet told me that Mg needs to be tested from a tissue sample....good luck getting a doctor to order that one, or ins. to pay for it. I am not even going to try. I am afraid of pushing doctors now, esp. since doing that recently resulted in my being fired by our PCP, and it took us 5 new PCPs to find one who would prescribe our controlled drugs. We were treated like junkies who crawled out of a gutter by most of the docs we saw, and we are senior citizens taking tiny doses of those drugs.

klutzo

Hi Klutzo,

Unfortunately you are absolutely right - magnesium is ridiculously hard to get an accurate test for. According to the 3 books I read on magnesium, the plain serum blood test is useless - as you say. Why docs keep running it is somewhat of a mystery. The red blood cell intracellular test is a lot more accurate. But even that, if I am reading the text correctly, is only looking at the red and white blood cells - "up to 40 percent of the body's total".

A test that they do recommend is the Buccal cell smear test (EXATest) that uses cells gently scraped from an area in the mouth between the bottom teeth and the back of the tongue. Measuring the magnesium in this way gives a better indicator of the amount of mg in heart and muscle cells - the two major body tissues affected by mg deficiency.

According to the "Magnesium Miracle" book, the EXATest is covered by Medicare and insurance companies. I will find out about this after the first of the year when I try to have it run. It may be that when this book was written (2003) it was covered but not covered now. Or maybe the book was wrong. Insurance is an ever changing thing. Keep your fingers crossed.

All 3 books agreed that the most accurate and reliable test (ionic magnesium test) is only available for research purposes - not for regular patients. I guess labs don't want to purchase new (probably expensive) equipment when they can continue to sell the serum test. After all, magnesium isn't really important

I understand, klutzo, that you are in a position where you don't want to push any doctors right now - a terrible situation to be in. If I am able to get Medicare to pay for the test, I will let you know what codes they used, etc.

Take care,

 

[Hysterical Woman]

Freddd

Hi Weldman,
See the previous post as regards toxicity. I have found this zinc very effective but haven't noticed any lack of effectiveness from a chelated zinc from another maker with different forms of zinc.

Hi Freddd,

Once again - very valuable information - especially regarding sensitivity to aspartic acid as being a possible methyl B12 deficiency and your experience with the brand of zinc that you mentioned in your earlier post.

Take care,

 

[Hysterical Woman]

Klutzo

Hi Fred,
I can testify that although I am taking smaller doses than what you recommend, since starting the MB12 I have cut my benzo dosage by 1/3 without withdrawl symptoms. I've been on them for 24 ys. and before this even cutting 1/4 of a pill would produce intolerable withdrawl.

klutzo

Woo-hoo, Klutzo, that looks like progress to me. How long have you been taking the MB 12?

Thanks,

 

[nina_online]

Freddd, please warn about zinc aspartate

Freddd,

I am appreciative of all the research you've performed and shared and respectfully request the following:

I believe I am not the only one who would appreciate it if where listing your protocol / supplements, you indicate/warn that the Country Life zinc that you prefer has aspartate. Glutamate and aspartate are a death sentence to me and many others. I did see your post about B12 deficiency causing such sensitivity, but in any case, it seems repair is slow while the effects to some of us of glutamate and aspartate are immediate. ( I do take B12s per Yasko and per your protocol, but have to increase slow due to runaway detox. In the meantime I am suffering terribly from excitotoxicity).

Thanks, and thanks for all the great info you've provided.

Best to you,
Nina

Hi Weldman,

Currently I'm taking Country Life 50mg Zinc.

• Vegetarian
• Target Mins
• Dietary Supplement
• Kosher

Target-Mins are complexed with specific carriers for optimum mineral transport. Zinc (as zinc citrate, histidinate, picolinate, alpha-ketoglutarate, aspartate http://www.iherb.com/Country-Life-Zinc-50mg-180-Tablets/6385?at=0

I can't say that I have ever noticed any difference from one brand or kind of zinc to another. I also get 15mg of zinc a day from the Calcium Citrate/magnesium/minerals I take from Costco Kirtland.

 

[Lotus97]

L-Glutamine

Countrygirl,
Good God No! I do not take Glutamate. I take L-Glutamine, an entirely different animal. Look it up on Google and you'll see why I take it. It is the primo thing for leaky gut, gastritis, etc.

I have horrible bile reflux gastritis ever since they removed my gallblader, and L-glutamine helps more than all 3 of the drugs I take for it. It is also supposed to help immunity, but I'm not sure how. However, getting the dose right is very important. Too much changes it into the neurotoxic form, and the clue that you have taken too much is brain fog. Then you back off the dose.

I recently read one of the Big Kahuna doctor's lists of recommended supps. somewhere on this site and L-glutamine was one of the must haves, but I can't remember where I saw it or which doctor it was. I do remember the poster stating that all CFSers are deficient in L-glutamine. Sorry, I have major brain damage from the car accident that brought on my Fibro, and my memory isn't so hot.

klutzo

I'm a high protein diet because that seems to work well, but now I'm wondering if all that Glutamic Acid is being converted into Glutamate or into Glutamine and then into Glutamate. I realize most of it isn't (at least I hope not), but the higher the protein then the higher the likelihood of it happening.

 

[dannybex]

According to Dr. Eric Braveman M.D., manganese, b6 and taurine may help convert glutamate and glutamine into gaba, the calming 'cousin' of the other two.

 

[klutzo]

Lotus97,
I never go over the recommended dose of 4.5 grams of L-glutamine. The brand I use comes with a 4.5 mg.scoop. It may well be that you are getting more of it naturally from your high protein diet. I eat a high carb, low protein, very low fat diet, due to other physical problems I've developed over the course of this illness.

It's been a long time since this post started. I had a precancer in my stomach for almost a decade and my father and grandfather died of it. I looked up Chinese research since they have a lot of stomach cancer (they eat lots of smoked and cured foods). I found that they tested all people with this problem as being deficient in vitamin C. Their treatment, which reversed supposedly irreversible stomach precancer was L-glutamine and vitamin C. It had to be ascorbic acid so it would affect the tummy.....no buffered C allowed. In only two months of adding extra C to my glutamine, I had my annual EGD. I awoke in recovery to find my doctor asking what I had done, because the precancer was gone, an impossibility to conventional medicine . I am guessing the vit. C klils it somehow and then the L-glutamine restores normal mucus protection to the stomach.

So for me it's worth the risk to take L-glutamine. What scares me is that my vit. C ust have been too low, despite eating lots of red bell peppers and mandarin oranges and strawberries, and having some C in my multivitamin. My malabsorption must be really bad, even with the expensive prescription enzymes I must take now.

I am sure glutamine may not work for, or even be risky for many. We are all so unalike, yet alike more than unalike, if that makes any sense. I need to go back to bed...it's 4 am.

Klutzo

 

[heapsreal]

According to Dr. Eric Braveman M.D., manganese, b6 and taurine may help convert glutamate and glutamine into gaga, the calming 'cousin' of the other two.

I take it as gaga is a typo for gaba??

I also wonder if low carb diets can reduce tryptophan from crossing the BBB and making serotonin which is also a calming neurotransmitter. either high carbs can help with this or supplement with tryptophan/5htp a few hours after eating any protein so other amino's dont compete with trypto across the BBB??

 

[Valentijn]

Taking Strattera has removed my brain fog, as well as my other OI symptoms.

I also find (Lady) Gaga very calming

 

[Abha]

Hi Dannybex/Klutzo and all...I haven't read all the threads as of late but I'm now interested in lithium orotate.I have watched a Dr John Gray(ex Monk)on you tube re LO and depression/brain fog etc.It seems to work for him and his patients.It can be used too in coming off medication.LO is a mineral not a drug.

 

[Seven7]

Go horizontal until the numbness/noise/weird feeling is gone. If I can't lay down, I bend over forward while sitting, resting my head on the table/desk until the numbness/noise/weird feeling is gone.