19 replies to this topic

[mintlilacs]

Hi Everyone,

I’m 26 and I have Chronic Fatigue Syndrome for the past 8 years. Right now I’m trying to make it through social work school. Besides the fatigue, it’s the short-term memory loss and cloudy/foggy thinking that gets to me. I’d really appreciate any ideas of supplements or nootropics ( and their dosages) that might help these symptoms or the illness in general.

I’ve tested positive to neurotoxins, ( www.chronicneurotoxins.com ) which probably are causing/contributing to the problem. The issue is how to get rid of them and how to stop the body (or virus/bacteria) from producing them?


Thanks,

Cobi

[lynx]

What drugs did they recommend for you at that sight?

[stellar]

I remember reading an article by IAS from someone who suffered from CFS, I think. One of the things they took was
Milnacipran:
http://www.antiaging...milnacipran.htm

They also talked about Modafinil.

[pSimonKey]

No trans fatty acids replace with good EFA's ie Hemp oil 30-40mls a day and fish oil EPA/DHA, No coffee replace with green tea Jasmine green would be the best for you or no stims at all if possible. Lecithin 5-10gs a day, reduce wheat/gluten from your diet, B-Vit complex 3x100mgs of each a day but no later than 17.00 in the afternoon, Vit C 2000 mgs a day, a good multi min/vit, Cordyceps sinensis 500mgs-3000 mgs a day, Avena sativa, Liquorice as a tea, Vincamine 5-10mgs a day, 300mgs of milk thistle extract a day, Ginkgo 25-50 mgs 24% a day, 100mgs 5Htp a day, 7-Keto-DHEA 10mgs a day, Qi Gung and Pranayama meditation every morning.
Be very very gentle to yourself often. Most of this information is to get your core immune system back in to good shape via prostoglandin activity whilst also reinforcing and balancing adrenal function/Kidneys. Stress of any kind is very detrimental for CFS as you well know so stimulants are are no-no. Enjoy being very relaxed as much as possible and good health will return alot quicker.
Best wishes Simon

[pSimonKey]

and ALCAR 1000mgs ALA 100mgs
Tally Ho!

[psychenaut]

Amazing that you post this- recently I became aware of a study currently in progress using pharmaceutical quality EPA in CFIDS (Chronic fatigue) cases. There seems to be a connection with the ciguatera toxin and chronic fatigue as you allude to with your own situation. Unknown how, and to what degree, EPA relieves symptoms. A pure EPA seems to be key, DHA or EPA/DHA combo fish oils show no results.

RelentlessImprovement.com - Pharma quality EPA.

I do wish you the best.
Kind Regards,
psychenaut

[mintlilacs]

Chronicneurotoxins.com recommends the prescription drug Cholestyramine . It is a powder that you take. It is used for people with high cholesterols to bind to bile salts and the cholesterol they contain. According to the website the neurotoxins constantly leave the brain and cycle into the bile and then into the gut and then are reabsorbed. I tried the drug and it didn’t work for me. It also doesn’t stop the production of toxins, so it presumably would have to be taken indefinitely.

Milnacipran and Modafinil are probably worth a try, although neither one addresses the neurotoxins or any underling cause.

Unfortunately, I’ve tried most of Simon’s list. I’ve tried flax instead of Hemp, and green tea instead of Jasmine, though. I don’t know if that would make a big difference.
I’ve tried ALCAR. But I haven’t tried, Acetyl-L-Carnitine Arginate, Anyone try it?

Psychenaut – I’ve read about the benefits of fish oil, and I’ve taken many different combinations, gelcaps and liquid, even trying the new Neptune Krill Oil. I guess its worth a try taking just EPA. But at $49 bucks it’s a lot of money.
I tested positive for ciguatera toxin. I’d really be interested in more info on the trail. Such as the dosage and times per day, and how soon benefits were usually seen. If you can’t post the info, please email me privately at mintlilacs@netzero.net


Thanks everyone,

Cobi

[lynx]

Increasing your bodies detox ability seems the best strategy now, as well as offering neuroprotection. In that regard:

R-ALA
Indole 3-carbinol
Calcium D-glucarate
Sulfuraphane--broccoli etc
Ellagic acid
Curcumin
Acetyl L-carnitine

Really I am skeptical of their tests, however, even if you just have Chronic Fatigue, then the above will help.
It would be helpful to know if you have had blood tests for:

Luteinizing Hormone
Follicular Stimulating Hormone
Cortisol
Fasting Insulin
Insulin Resistance
Testosterone
Androstenedione
LH/FSH ratio
TNF-alpha
DHEAS
C-Reactive Protein
Homocysteine
Prolactin
blood sugar
Triglycerides
Granulosa Cell VEGF
5 alpha-reductase activity
Estrone (E1)
Estrone/Estradiol (E1/E2) ratio
ACTH

[scottl]

On more basic matters what is your diet like? I ask because I worked with two people with the same diagnosis who were both not eating enough protein (even for a sedentary person).

Oh and I know it must be tough, but do you get any, or try to get any exercise?

[REGIMEN]

Good tip on the protein...after reading up on the Whey and Casein articles by David Tolson at www.1fast400.com I have considered getting those into my diet as it seems with the fatigue and all, my digestion/metabolism is rather slow. "Better" proteins that are digested and assimilated more easily seems to be the way to go...along with an additon of tyrosine, tyramine, taurine, and inositol.

[scottl]

"digestion/metabolism is rather slow."

How about real food for protein?

""Better" proteins that are digested and assimilated more easily seems to be the way to go..."

Maybe. You can always try it and see how your body reacts. You might also try e.g. some salmon (for omega 3 fatty acids) and a lean steak "with the fat cut off" for comparison.

If your digestion is...not up to par...yoru body "may not like casein". You can always try them to see how it goes. Just a warning that buying the 50 lbs bag of casein to start may not be wise.

Oh and you may want to see if a digestive enzyme is helful for you. If you do try one, make sure it it one that is broad specttrum plant based. They work in a wider pH range and in my experience are much more effective. Similase is one product. There are others.

[dimjimm]

Hi mintlilacs and friends, this thread was so timely for me, I was forced to delurk . I too have problems with memory, slow metabolism and fatigue. Fortunately, it’s not CFS. Unfortunately I don't have official diagnosis; I'm due for a cortisol/acth test soon. If that doesn't turn up anything, I'll be looking into my glucose/insulin metabolism.

For memory troubles, I suggest treatment that targets the hippocampus. The hippocampus stores spatial and linguistic memory, but not sensory (visual, tactile, etc.) info. So if you forget names but not faces or can't find and your keys but can 'picture it', it may by hippocampal problem. CFS and other disorders, like stress and depression, damage the hippocampus causing memory dysfunction. Fixing this damage is vital to restoring you memory.

I'm a nootropics guy so I'll keep my recs in that area. For memory and a damaged hippocampus:

Bacopa - inexpensive herbal derivative, widely used in India to treat memory/attention problems
Tianeptine - novel antidepressant, low side effects, SSRE serotonin reuptake enhancer, not approved in the US
*Interestingly, the both of these substances regulate cortisol. Best Tianeptine price at smart-drugs.com, indianmeds4u, pharma88.com.

I also recommend a nootropic stack maximizing nerve growth factor and oxygen metabolism: *=in my stack, #=enhances NGF

Aniracetam* (750mg morning/afternoon) the best 'racetam for the hippocampus
vasodilators: Vinpocitine* (5-15mg 2-3x per day) or Pyritiniol (100-200mg 2-3x per day) or Hydergine# 4.5mg (2mg 2x per day)
antioxidants/nutrients: ALCAR*# and R-ALA* and Idebenone*#
choline source: Phosphaditylserine* (probably the best for CFS but expensive) or Centrophenoxine (also good, also expensive) or Alpha-gpc (affordable with many good qualities)

Random thoughts:
For a stimulant, you may want to try L-tyrosine, its no modafinil, but is worth a try anyway.
If these neurotoxins are heavy metals, have you looked into chelation therapy?

[lynx]

Actually, BDNF seems to be more important for restoring hippocampal plasticity than NGF, and this is the primary proposed mechanism for Tianeptine and SSRIs. Tianeptine just happens to work faster and better with less side effects, but most antidepressants end up increasing BDNF.

[strongman]

Try something called "marmite" its a yeast extract.

http://www.spurgeon....hil/marmite.htm

It's filled with tons of natural B vitamins, really seems to clear my mind and give me energy. Try 1/3 teaspoon 3 times a day. I think you can get it at most grocery stores in the baking section.

God bless,

Strongman.

[mintlilacs]

I agree that focusing on detox is important. I’ve tried everything on the list except for, Indole 3-carbinol, R-ALA and Ellagic acid. Do you usually notice a difference while on those two or its more of a preventive?
I have normal: cortisol, insulin, dheas, C-Reactive Protein, and triglycerides. The rest I don’t know.

What is Granulosa Cell VEGF? Is that a Growth Factor test? The reason I ask is that I have very slow wound healing ability since getting sick, I’m not sure if its growth hormone/growth factor related or some other possible mediator, such as dysregulated immune system, inflammation or toxin related.

I get lots of protein, mostly from whey. ( I get mine from proteinfactory.com, they sell by the pound and they give you many options).
I’ve tried exercise regimens, but I have exercise intolerance, a classic sign of chronic fatigue syndrome, in that once I reach a certain threshold, (very low). I feel worse instead of better. I have a limited amount of energy each day, and when I spend it exercising, it leaves nothing else for other things.

Tianeptine benefits memory and a damaged hippocampus? I’d be interested to know more info and research on that. I used to think that I had low serotonin. Because I have low grade anxiety, get easily over stimulated and tend to be compulsive/perfectionist. So I tried prozac, paxil, 5-htp, and st. john’s wort ( not all at the same time) and they did absolutely nothing for me. Didn’t even boost my mood (although I never suffered from low moods). Maybe I have low gaba instead?

About Vasodilators, I had a SPECT scan of the brain done and it said that I have “Heterogeneous moderate hypoperfusion” which I was told means I have low blood flow to the brain. So I thought the best thing to do is to take a Vasodilator. I tried Vinpocetine and it did nothing. But now that I know about the neurotoxins, I’m thinking that the low blood flow to the brain may be a compensatory mechanism of the body to limit the amount of toxins reaching the brain. And therefore I should avoid vasodilators. Does that make sense?

If all SSRIs increase BDNF, and I tried prozac and paxil with no benefit, does that mean, that Tianeptine would probably not be of benefit either?

I’ll see if my grocery store carries marmite.


Thanks everyone for your suggestions,

Cobi

[lynx]

Cobi, When you say you tested positive for ciguatera toxin, was that a blood test or that computer eye test from the site you listed?

Do you suspect you have an active ciguatera infection? Or just cumulative damage from one time exposure?

R-ALA, Indole 3-Carbinol, Sulfuraphane, Ellagic Acid generally won't give any acute reaction, they are inducers of Phase II detoxification processes.

How much Vinpocetine did you take?

One thing to keep in mind is that generally one thing at a time is not going to make a huge difference, the premise is to stack many agents that work together to support detox, neurological function, stress response etc.

[mintlilacs]

I tested positive to a Ciguatera blood test.
More info at http://www.ncf-net.o...teraEpitope.htm and www.ncf-net.org
I think that it’s an active ongoing infection.
I took 30mg Vinpocetine for at least 6 weeks. I think I went up to 40mg but I’m not sure.
I agree with your stacking theory, things probably work synergistically, and by different pathways.

Are any of the phase II inducers likely to give a herxheimer reaction, (also known as a healing crisis)?

Does anyone agree, that in a neurotoxic situation, brain stimulation or increasing cerebral blood flow, might be harmful? If yes, are there any nootropics or supplements that might protect my brain while still enhancing function?

Thanks for your interest,

Cobi

[lynx]

Hey Cobi,

Based on the short description posted at the site you listed
http://www.ncf-net.o...teraEpitope.htm
It seems that boosting Natural Killer cells would be the way to go. To that end take a look at

IP-6 Cell Forte--you can make this yourself from Inositol Hexaphosphate and Inositol
AHCC
Beta-Glucan
DHEA
Garlic

Just google any of the above with "natural killer" and you will see what I mean.

Again, I think combining multiple agents would produce the best results. I would go with homemade IP-6/Inositol Cell Forte, AHCC, DHEA and Garlic. Simultaneous use of Phase II inducers and glutathione boosters would be the best strategy to avoid any potential healing crisis.

[velocidex]

Try something called "marmite" its a yeast extract.

http://www.spurgeon....hil/marmite.htm

It's filled with tons of natural B vitamins, really seems to clear my mind and give me energy.  Try 1/3 teaspoon 3 times a day.  I think you can get it at most grocery stores in the baking section.

God bless,

Strongman.

You really shouldn't be recommending products without a full knowledge of the implications thereof. Many CFS patients have GI candida infections due to a reduce immune system. Giving them yeast products is the last thing you want to be doing.

[jubai]

I will bet 1000$ that you have mercury (silver) amalgams in your mouth, or that you had some vaccines containing mercury when you were young.

Have your filling removed and replaced by white ones, then do a mercury chelation with

DMSA
r-ALA
vitamin C

zinc, selenium

and some chlorella


I was starting to get a cloudy mind and unusual fatigue, got all this done, and 2 months later I felt much better.

do a google search on CFS and mercury, you will be surprised