Simple & Complex CFS theories, electrolyte causes (very long read) & RE:Nil

[Guest guest]

Hi everyone, I have a lot of CFS and related stuff i would like to

discuss tonight! But first, for my own saftey :

Disclaimer : I am not a doctor, do not listen to what I say without

consulting some sort of qualified professional. What is expressed

here is opinions, research and theories and personal advice as well

as some personal issues and questions.

Disclaimer 2 : This is very long. Towards the end I realize i went

overboard, so if you have trobule reading long or complex things

with some typing errors, stop here, or print this out, or ignore it.

I have tried to space the subjects apart so its not one huge text

blob.

Disclaimer 3 : This was originally a reply to 1 person (which i did -

to NIL) , but turned into quite a bit of CFS theroies research and

unique opinions from myself. I switched topics somewhat randomly and

I dont know why but my mind was hyper stimulated tonight possibly

from my medication " Neurontin " . I'm in a takative mood and lonley so

i apologize for the excess repeating or subject changing. Thats

all , Feel free to criticize me nicely though, or complement me if

you think anything I said has merit.

This was the original question by NIL (which will be addressed) :

> If dehydration is the cause what would you think the cause of

dehydration could be if one is getting plenty of water? Could this

be because of acidosis?

This is my response and quite a bit of writing on CFS theory.

Hi Nil,

It could be just the opposite, alkalinosis which is what I think I

had when I hyperventated to IV solution w/salt probably from

magnesium or postassium defiency.... The body is very very tightly

regulating electrolytes since they basically are our electrical

energy in every cell. They all need to be balanced correctly. Based

on my more recent research i tend to agree that electrolyte

defiencies (causing the kidneys to retain/lose salt, or postasiun or

bicarbonates) to compensate. I am still trying to learn how vitamin

D , hyperparathyroidsm and calcium problems play into possible

electrolyte imbalance and immune imbalance!

The parathyroid glands will also try to compensate for any

irregularities in electrolytes and this can cause all sorts of werid

things , for example, excess sweating which I have frequently.

Increased magnesium seems to slow this down a bit. I mentioned this

before but i amd positive I remember reading a paper that many

CFS/FM/GWS patients have the identified panic disorder gene,

activated or something.

Kurt thinks its a biotoxin response, and he may be right. You should

read his paper which I enjoyed very much. The only thing, and I

might disagree with is I am " skeptical " of Shoemaker's main

treatment because of the many horror stories i have heard on

cholstyramine, to detox. Mold is dangerous for sure but I am not so

sure about that either. Its even more horrifiying recently because

that boy died from trying to chelate heavy metals just this past

week. So this stuff is a little scary for me. (have bile detox from

CLSTR or chelating) Either way Kurt wrote up an extensive paper

with good information that I have incorporated into my brain already

and it looks like it took some time to write it up. Everyone who has

not requested Kurts " Biotoxin induced panic " research paper should

do so, I rec. it highly.

Sometimes I wish we could just get a liver transplant or filter our

blood or something like that from a healhty person and see what

happens. If we are still sick, its not the liver or blood! I think

Low Dose naltrexone has proven for me, it is NOT the final cure (at

3 months at least), though, I am 55% more functional, happier and

better. But my immune system is now fully operational IMO. Something

just is not right otherwise that LDN cant fix. I think its the

central nervous system (an infection of, or brain damage - some sort

of hyperactivity and i do think its a virus or 2)

Back to the electrolytes...

I doubt the electrolyte imbalances are genetic first of all, I think

some viral (Parob19, EBV,CMV,HHV-6) and perhaps Lyme and mycoplasma

are somehow involved in this procress causing us to have electrolyte

imbalances so they can live happy, or rather, our body has CNS

inflammtion (via subtance P and glutamate + calcium overload at the

spinal level ) - which makes sense since all the above viruses love

nerves and the CNS system and love to screw it up. Calcium can push

magnesium out which could effect potassium and then you get

parasites so your salt is messed so it really can be quite

complicated though it probably is a simple CNS reason, and the

kidneys are just trying to compensate which is stressing them

probably.

HHV-6a may be the one that interacts with any of the others to

create CFS perhaps, same with AIDS - in fact this has been proven

now for HIV or AIDS. Kutapressin(nexavir) and a few other more

dangerous antivirals can bring HHV6 down supposidly. Glutathione, as

Rich and the HHV foundation has found out, can also stop it, but

that was in vitro. Our GSH expert Rich, can hopefully continue to

figure this whole GSH out more in relation to eveything and other

diseases that I personally believe are at least cousins to CFS -

Polycystic Ovary Syndrome whom we know a group member or 2 who took

metformin for insulin resistance or PCOS and was cured or remissed

(CLUE!!!) but also PCOS happens in men too, called early

androgenetic alopecia and also insulin resistance is HIGHLY suspect

in lots of diseases not excluding good ole CFS all seem to be

related somehow and GSH may be involved, its proven raising GSH in

PCOS 'check pubmed', and androgenetic alopecia has the same hormone

pattern as PCOS (via pubmed as well) so i suspect GSH involvment

there too, maybe at the hair follicle itself but its the

dihydrotestosterone which causes the clogged follicles. More DHT

means DHEA/testosterone/estrogens/progesterones axis may be messed

in that.

Ampligen, Kutapressin (Nexavir), and Forscanet , Valcyte, Valtrex

(EBV) and cidofvir are the only ones that how shown SOME effecton

HHV6. I think the most toxic ones, Cidofovir and maybe Valcyte were

the most effecive but they are quite toxic, though Valcyte in pill

form if your healhty is safer. Anyways.... Point is that i think the

aforementioned viruses are the cause, and the mycoplasma and lyme

may be subsets or co factors. It could be the other way around

though? I do not know but common sense just tells me, if you have

elevated antibodies to EBV, for example, it sort of points to <one>

and perhaps the main trigger and problem. Dr Lerner has got this

down good, cept I am not sure if he tests for ParovirusB19 and his

Lyme and Mycoplasma imprtance in the illness. I do know he does some

Lyme though. Its parovirusb19 that should be checked more often

since it can be cured by IV immunoglobulins. It produces the EXACT

same onset, symptoms and co infections (ie:candida) as all the CFS

scope illnessess which is very interesting. (BTW pubmed study

supports the parob19 CFS connection and treatment).

Perhaps since Pb19 can be treated, and we know the cause, this might

be the ideal virus to study on how EBV, Lyme, or whatever trigger

the nearly identical immune problems that plague what i like to call

the " Syndrome Diseases " . (IE: Restless Legs, panic disorder,

innappropriate antidiretic hormone syndrome, polysystic ovary

syndrome - basically all the syndromes that doctors scrath there

heads and prescribe antidepressants, do nothing, or you end up with

addictive meds forever, or suffer. Sleep apena is a good example. It

happens much more often then people think (not just overweight!).

Its probably part of a syndrome, a disease that has not yet been

fully found a CNS probably, maybe like alpha wave intrusion.

I am so sorry. My replies will go way off topic because my mind is

buzzing with CFS and related ideas. I hope someone out there reads

this and is helped, I tend to switch ideas quickly to try to learn

how to cure this and find the cause. The only thing I am sure of is

that viral infections and probably the related toxins play a major

role in all of our problems and the CNS may be the key infection.

The gut problems i dunno. I use glutamine which should repair it.

BACK TO ELECTROLYTE/DEHYDRATION (lots more CFS theories keep

readin!) :

If you pee within hours after drinking even small amounts of

especially high glucose or sugar products, you are dehydrated cause

ya lose salt when that happens. The kidneys and parathyroid glands

regulate lots of functions of salt/calcium balance. EDEMA. This

means you are very dehydrated. The body holds on to the water and

does something with the salt (i am sorry i honestly forgot the

articles explainng this, but edema is always a sign of dehydration,

basically salt defeiency)

I do not think table salt with iodine nor the sea salt is the best

way to go though some people swear by it. I would personlly

supplement with what the salt/c procotol uses which is the real name

for the substance we call " salt " : " sodium chloride " = salt as we

call it. Sodium and chloride are SEPERATE but when they combine we

get the salt we need to survive. Its sort of werid but it really is

like the outside of our cells our like the ocean, and the inside,

perhaps like land. Interesting thoughts.

I can tell you that 4-5 grams spread out daily has helped me

(digestively and energy wise) quite a bit within only a week time.

The nausea was awful at first but after a day or so it went away and

i take the CMC pure pharmecutical sodium chloride tabs with orange

juice so i get the vitamin c for the protocol in ADDITION, orange

juice has potassium and magnesium so i get the best of it all. I'm

just experimenting of course so im not yet going to like 10-12 grams

of each though. My Low Dose Naltrexone recovery has indeed reached a

pleatuea. Its been only 3 going on 4 months and I can tell ya , LDN

gave my immune system some major boosts ,, i had herxs, fevers, but

my fibro pain vanished...CFS still lingers and well as some minor

aches. I am thinking that LDN can boost all my NK cels, CD8's, CD4's

all of it to the max but ill still have CFS, therefore, I do not

think CFS is an immune defienecy but something else, perhaps a

combined dysfunction and toxin overload as Kurt mentioned. It may be

an infection of the CNS where our immune cells are have trobule

getting to it fighting and when they do, like in MS maybe it causes

demyleinaton from the NO or whatever released to kill the infection,

or perhaps since our neurophils have so much increases apoptosis,

they are being invaded, i suspect Lyme in that case. As I mentioned

before I think, and this is major i may repost this.... go on

pubmed.com. The ONLY 2 studied disorders with the exact same alpha-

wave disruption in slow wave sleep are Lyme Disease and

Fibromyalgia. I do not known if CFS and GWS has been studided for

alpha intrusion, but i just think that makes Lyme a suspect or

whatever " process " in the CNS of these related syndromes is occuring

suspect.

Back to your subject for a bit Nil :-

HIGH sodium in your blood means you are dehydrated because your

kidneys, are compensating creating a state of salt conservation. I

googled sodium defiency, dehydration, parathyroid/calcium and it led

to respectiable medical citation. The thing is, potassium and

magnesium, your two more 'inhibitory' and intracellular electrolytes

must be balanced as well. Calcium also must be present or your

parathyroids may hyper act. Its complicated even i cant understand

it all.

I found this out the hard way in the hospital. Everytime I got a

saline/sodium/water IV (twice in the past month) I started

hyperventilating. The rapid increase in either blood volume or

sodium was probably a shock, because i had been vomiting and lost a

lot of potassium (as shown on blood tests) and especially ESPECIALLY

magnesium though i found this out myself. So they had to inject

Ativan which basically substitues for magnesium as in inhibitory

gaba , anti-glutamate, anti-exciotoxcity mineral - and also

hyperventalation occurs because of alkalosis in the brain or , its a

natural response to actually balance things.

When I was ill, as soon as the ativan wore off, i got panicky again

and all the sick symptoms of whatever i had returned. I eventually

got Klonopin Wafers. This held me for 1 week. Then again , i was

ready to go to the hospital but my magnesium sulphate injections

were reknewed , so i did 2ml of it IM knowing magnesium is

inhibitory/gaba etc...) and BOOM, all symptoms dissappeared

including the rapid irregular heartbeat which they said as the

hospital may have have been from potasiun defenecy but I am sure all

the electrolytes were imbalanced causing all the seizure like

symptoms - (they had to put me on the seizure watch bed and put

a " hep " IV in so they could stop the seizure if i has one - didnt,

and you know I had 1 bottle of dasanti water which i drank lying on

my side in terrible panic/confusion - but i read the bottle - pure

water with magnesium and i think it said potassium, no, sodium

though.. I think that bottle of whatever helped me from

hyperventilating /alkalinosis and perhaps a seizure.

The point of my story is, electrolyte imbalance can really mess you

up and hospitals and doctors often dont recgonize there are more

than just sodium cholride as an electolyte (though its the most

important). Those IV's should either be custimised to have small

amounts of potassium or magnesium depending on the problem.

Vomiting/Direhha for 2 days without being able to eat or drink made

me feel like, I was gonna die for real I was in anambulance twice....

By the way , I am perfectly better now, in fact, much better then

before. Dont know if it was a stomach bug, or a herx from LDN workin

its magic on infections, but everytime i get sick, then better since

LDN, something good usually comes out of it. My candida is gone i

think and I had it since i was little (white coating on tongue etc).

I am thinking it may have been me defeating candida finally. Its

hard to describe low dose naltrexone experiences because people use

different pills, and compunders but I use the liquid which is

AMAZING and superior to the caps, though i alternate since I am

prescribed the caps. I've even went up to 5.0mg with even better

results though subtle. The original patent that the creator, Dr

Bihari, has for LDN is for CFS and MS and Herpes infections by the

way, feel free to look that up, i found that interesting because in

Dr Biharis experience, CFS patients usually only regain or

experience a 50% remission in overall symptoms. He says the next

step is treating those stubborn infections that our immmune systems

dont hit for some reason - probably alll the aforementioned CFS

causing infections, and since LDN does increase all of our immune

parameters (ancedontal but there is substatinal evidence) - there is

clearly another problem in CFS and FM patients that the immune

system wouldnt make a difference in. Lots of possibilities as I have

been babbling....

Electrolytes again, when i was sick recently - :

Blood tests showed i was very defiecnet in potassium. They didnt

check magnesium, its not standard and anyways, its all intracellular

that counts which is more expensive to test for.

Orange juice is excellent for magnesium and potassium. It contains

plenty of postassium, and some magnesium too, and vitamin c. Its all

around good. Pedilyte I was using also, the salt content in it was

making me so so so so sick, a sign of mag or potassium defiency or

even parasites since it may have been a herx - its confusing. Now i

can down the saltest (sodium chloride I am talkin about) product

with no problem. Pedlyte i can drink without almost puking it up

too. When I was sick, i was basically " salt sensitive " . It was very

strange.

I have to get this strange but interesting theory out in the open

finally. Its been in my head and a few other hair loss sufferers for

2-3 years. Its complicated, google searches are wonderful remember

that. Same with pubmed. Ill try to explain what I mean the best i

can:

The male hairloss/stress connection (clue) absent in women theory?

Many other hairloss sufferers that are men I have researched with

think hairloss in men could be a key in why CFS/FM effect women more

than men. Men dont get these " syndromes " as often CFS,MS etc.. Women

dont bald generally, perhaps because they have low DHT, a powerful

androgen which causes balding in men.

Whats interesting is women have been proven to be more susceptible

to stress in general (plz dont take offense, im just generalizing

pubmed studies) Men handle stress perhaps the same, but dont develop

these syndromes from stress, therefore, indirectly " cope " with

stress better.

Let me remind you : stress (any kind, includes social anxiety even)

is almost always the down to earth trigger of these diseases

CFS,GWS,FM CFS =

Examples :

CFS = Type A personality, dopamine imbalance before onset?

GWS = Basically, old term shell shock SYNDROME & WAR

FMS = trauma usually, car accident, death in family, severe

illnessess and commonly, Fibro people have latent CFS, so minor

stress/truama or overwork can trigger it.

Now why dont some people in Gulf War Syndrome have it? One theory is

once again, all these syndromes involve what i believe has now been

called the panic disorder gene. It doesnt mean you have panic

disorder, but if you read Kurts paper, and we are genetically

programmned to biologically panic (manifests differently) under

certain stress, or enough of it, then we get CFS, FM, GWS. So

basically, people with GWS had some gene(panic), inability to deal

with stress due to the the things I will be dicussing further down.

Let me finish with the final point.

I think there is a link between balding in men, and less " stress-

induced-syndromes " balding is only the clue,

I think there is more stress-induced-syndromes in women because ,

generally, they do not bald like men (same clue) (I.E - androgentic

alopecia). These are only clues. The real science needs time but 2-3

years ago someone in my hairloss friends group got a study early,

studied it, and realized the connection to CFS (cause they knew I

had it, though mild).

This one might not make sense, it related to seizures at GABA-A with

the neuroactive steroids I am about to mention , but it might help

you understand the neuroactive steroid connection and how/why

finasteride (Propecia) stops the " clue " in men - baldness.

Full PDF :

http://www2.ncsu.edu/unity/lockers/project/cvmaprhome/publications/re

ddy_02.pdf

This is going to get VERY complicated unless you study hairloss and

finasteride's effect on neurosteroids/enzymes but the bottom line is

this :

There is a enzyme called 5 alpha reductase, type 1 and type 2. Type

2 is belived to be all in the scalp. Propecia (finasteride) inhibits

it. By doing this, it prevents this enzyme from converting normal

testosterone in a man to dihydrotesterone which clogs the hair

follicle and causes baldness. The Type 1 form is believed to be a

small amount in the scalp but perhaps mostly on the face and hair

growth elsewhere but mainly involved in oily skin type production.

Avodart (dutasteride) blocks both 1 & 2 of that enzyme stopping

hairloss generally and oily skin.Both lower libido and

other " problems " in men sexually.

Now if you are following me on this, when the enzymes are inhibited,

the testosterone in the man raises quite a bit because its not

converted to its other form that causes baldness which naturally it

should. But what happens is that extra testosterone can be I think

the term is aromatized or converted into estrogens (i dont know what

type of estrogens, but i believe its the not good ones!). Hence one

of the side effects of both Propecia and Avodart are male breasts

called gynocomostica(SP).

Now here is where the key is. If you dont get the above search

google hairloss boards with these big upcoming words and finasteride

or you can email me or respond to the post or ignore and come back

after re-reading and researching. Basically, pregnenolone is a

hormone that modulates the Gaba-A receptor to help us deal with

stress. But it isn't alone in that duty and it happens to be at

normal levels in both sexes.

The study (PDF) I cited above mentions these neurosteroids all

derived originally from DHEA or progesterone : deoxycorticosterone

(DOC) -> this is another stress modulator and works better than

pregnenolone at the Gaba-A site again. See the corticosterone in the

same! Sounds like cortisone, or cortisol. Right! (Hence its called

a " neurosteroid " which probably originally came from like i said

DHEA or perhaps progesterone from the adrenals and ultimately is

related directly and maybe converted from -> cortisol - our natural

stress dealer which we die without (ie s Disease)

NOW we goto the even bigger stress modulators @ Gaba-A , from

deoxycorticosterone (DOC) we get ->

allotetrahydrodeoxycorticosterone (THDOC)

This is the final product, i hope because i cant pronounce anything

much longer.

here is where baldness/5 alpha reductase enzymes come into play :

Now, to get DOC to THDOC, we need 5-alpha-reductase enzymes, the

SAME ones that are inhibited by Propecia and Avodart for baldness.

Many people on the message boards i view for years report lowered

resistance to stress when on Propecia. Makes perfect sense. But

whats interesting is testosteroene will rise when on propecia, DHT

will lower, good for balding, but bad for hormone balance because

the extra testosterone aromatizes/converts to various estrogens.

Women seem to be more susceptible to CFS and Fibro

Women have more estrogens then men (there are many types of

estrogens so who knows which one is doing what)

Men have more testosterone, however, using the 5 Alpha Enzymes, we

convert some of it to dihydrotestosterone (causing baldness)

Men that take propecia for awhile, develop estrogen profiles similar

to women, though no evidence of increased CFS or FM.

The key is the enzyme usage in men vs women, I have no idea, but 5

alpha reductase in men works harder (or there is more) probably

because of more testosterone , this causes increased baldness (DHT)

BUT it also helps convert deoxycorticosterone (DOC) to the stronger

stress/gaba helper - > allotetrahydrodeoxycorticosterone (THDOC)

which is the strongest neurosteroid that hits Gaba-A and maybe other

brain regions all based on simple cortisol, our simplest and main

stress dealing hormone.

Epstein-Barr Virus ONLY comes out during stress, any kind -

emotional, physical. This is proven on pubmed. Astronuats EBV titers

raise while going into space. SO EBV reactivation or titers is a

good indication of stress (could be another internal virus who knows

but EBV is like a stress meter IMO)

If anyone sees what I am saying comment, email, respond, research. I

have for years on this but never revelaed it to the CFS community

because its so therotical and VERY complicated and there is simply

not enough science caught up yet to understand THDOC/DOC and the 5

Alpha Reductases involvement in women vs men and the baldness factor.

Another interesting opinion I have is that men with CFS or FM tend

to be slightly more femenine. Not as aggressive. It fits me

perfectly. I am not saying this means they are homosexual AT ALL, I

mean there hormone profile might tilt them more towards the edge.

Simple example of what I mean is that I am say more sensitive,

stress susceptible, and I know this is sexist but I like talking a

lot about issues in a relationship something men typically dont like

but women do, i hate sports. I dunno. I may be off, but I see the

pattern personally and with others. I work for a Fibro patient. She

is a women but, you notice patterns, and you can relate. I get along

better with men that are more shy and i would describe as a

introverted soft personality. Ill stop there. No offense intended.

And If i was a little sexist to men or women there, i am sorry.

Let me finish this werid theory up now -

That is just 1 of my theories on why women are effected more. And

you do know the saying that stress in men causing baldness. Its

true. But men seem to be able to compensate by converting stuff and

making more powerful neurosteroids in the brain that hit the gaba

receptors and maybe others and at the same time lose there hair.

Hence, a man with a full head of hair probably either 1) doesnt have

the panic disorder gene or 2) has found ways to deal with stress

naturally and lives a stress free life or 3) simply there is always

compensation factors, lower hormones etc etc. 4) a childhood that

was very stress free may indeed be key also. (remember stress =

infections etc...). I had " colic " it was bad, probably a sign of

something stressing me but asa baby all you can do is cry.

Anyways, when i reply i really tend to go off topic so i will try to

change this andi really tend to repeat and babble on. One reason may

because I am very lonley. Like many of us, I lost all my friends,

girlfriend(of 5 years) and my job and life. I am 22 and still

fighting for disability. I live with my parents who don't support me

and they are not very nice. I am college graduate but cant work,

UNLESS from home but i cant find any decent connections (any

suggestions? :-))

I am sure Ill get disability one day, my doctor is wonderful (Dr.

Enlander, i suggest anyone in NY or near to see Dr Enlander, he

knows it all (the latest - he use Xyrem and even has patient

testimonials on video camera of his treatment after 6mo-year and its

very emotional (to me) to see the improvement), and is compassionate

and will do almost anything to get your life in order the best he

can. He uses injections of what we lack : magsulphate, gluthione,

b12, folic acid, calosophan, and the most important : the liver

extract (kutapressin was the origonal, he uses another good one now

though when kuta left the market he found it worked just as well,

though personally, Nexavir(kutapresin) i think would be better and i

hope he can reformulate back to it since its back. I informed his

secratary of the website/company/contact,and availabilty and she

called so we will see depending on price and quality is what will

prob. determine if he reforumulates.

OK in conclusion on the electrolyt dehydration issue -

Signs of dehydration are urinating a lot especially after drinking 1

glass of orange juice <1hr later it just pees out), and especially

if you are eating/drinking high glucose/sugar foods you will lose

lots of electrolytes in the urine. Remember, SALT (sodium cholride)

is used to preserve things, cure meats, anti parasitic, and is

ESSEENTIAL for hydrocholric acid which is needed to digest food

and 'help clear the whole digestive tract' (IMO - this last past).

SO if blood tests show high sodium, you PROBABLY need more because

your kidney will work overtime to convserve every little bit,

therefore showing a blood test of high sodium. In fact , have an

endocrinologist check your parathyroid, if its hyper, that can be

the clue. There is so much info on the net, especially gto google

and check out hyperparathyroidism, sodium defeiency(sorta hard to

even find the info but there is some), and then the hypo and hyper

atremia's and kalcemia's and oh yes, im my blood test they said my

calcium was very very high - might be a hyperparathyroidism issue.

Magnesium opposes calcium in important areas. I think potassium does

to. You know, the bodies electrolytes are just all interconnected.

Drink pedilyte or maybe try recuporion(SP) or googinaid or even but

last resort gatorade(too much glucose) to replenise your

electrolytes and stop dehydration.

Another sign of dehydration (sodium chloride mainly) is a watery

mouth without enzymes (cause not enough salt to produce) so you get

gum disease and such and also you drool when you sleep. This is

documented , the drool thing and dehydration I know there is a clear

sign of electrolyte imbalance prbably sodium. When I say salt or

sodium i mean sodium chloride (true salt). Its like a 60/40 ratio in

the body of the sodium and chloride I believe.

So to answer your original question after my very probably annoying

repeating of information - no, i think its actually the opposite

alkalinosis that you may be suffering from. You can drink all the

water in the world, but it needs electrolytes, especially sodium.

Most tap water doesnt have the right ratios and many have little.

Bottle water that is reverse osmosis with everything removed is nice

sometimes, but drink liquids or even foods of course forified in 1)

sodium (natural, not table salt) 2) potassium 3) magnesium - which i

would try to get more of in CFS/FM - i eat frozen spinach/broccoli,

orange juice, luna bars (these are fabulous even for men trust me)

and I top my spinach+broccoli (which btw I boil so its slightly/mod

done, not soft which retains the minerals) with lots of extra virgin

olive oil, plain pasta sause (not too much) and actual table salt.

Stir the mixture up in a big pot and OMG, it is so so good and

healhty. My ex grlfriends parents were such health nuts i now know

the healthiest foods and diet in my opinion (and based on research,

mostly from sci.life.extension).

My dessert is either blueberries , strawberries, and of course the

occasional chocolate cake, pie or other sugar filled bad (IMO) item

for myself.

It is hard to do this but I went in 80-90% remission when i lived in

my ex GF in 2003 when i went on this exact very very specific diet,

and i was near rock bottom before this, so diet, electrolytes, they

all come together.

If you eat many sugar/sweet products, i suggest stopping and use

sparingly. Eat veggies that are green (spinach has VERY high

magnesium that is absorbable for example) Broccoli I THINK

sulphuophane(SP) a compound in it is now in trials for cancer or

some other diseases (scientists went nuts about this broccoli

compound some years back). Blueberries regenerate your brain cells

and keep them young, most dark berries do. For meat, chicken is

best , you want to eat the leanest meat. No beef. beef is bad imo.

Fish is GREAT but of course we cant handle the toxins like mercury

so... its iffy. But tuna is just the perfect kind of thing for

certain nutrients and fish oils if we could handle the toxins...

Basically, diet-wise, I have to say - stay away from the western

type diet with all the refined junk food, sweets and beef and really

just eat what our ancestors had to (though a bit better vitamin

mineral focus). Green leafy veggies, broccoli (add olive oil and

good plainish pasta sauce on top), blueberries, and suprsingly

cholcolate is very high in antioxidants and magnesium, dark cholatei

the best - In fact a recent study said chocolate has the highest

antioxidants of any food along with the others i mentioned - look

these up online, there are a few super foods i am missing. It also

contains some mood enhancers similar to one hormone involved in love

and a stimulant like hormone its sorta related to L-phenalanine, its

called phenethylamine or something. This, is why chocolate sweets

are often the gift of love on valentines day for example.

The last thing I did when i got 80-90 percent remission of CFS was

along with the above diet i used daily 1 glass of a soy protein

shake called spuri-tein made by natures plus . Its expensive,

$30/month for 1 canister but it contains every vitamin, mineral and

most importantly it has certification of the exact amount of each

amino acid per serving. (IE: isoleucine, valine, leucine glutimic

acid, lysine, proline, tryptophan ETC ETC) AND it contains extra

ones like molymedeum stuff like that all the detox stuff, selenium

and some unique stuff such as oat bran, psyllium (these 2 are fiber

helpers!) and of COURSE spirulina, a lot of inositol (good for

depression) and some extra choline too.., apple pectin, bee pollen

(werid lol?), many " lighter digestive enzymes it appears - papaya,

bromelain (towards the end of the ingridients list) chlorophyil -

(which is rich is magnesium btw) and biotin and many other things

that someone who knows a lot on nutrition can relate too.. , CFS

etc... i really think this product would benefit many PWCFS. Try it

out if you want, you mix it with milk, soy milk, it says juices but

that sounds yucky.

OK the only thing is, if you dont use a blender, it clumps and you

gotta stir it a lot and sometimes eat the small clumps but the werid

thing is, they taste SO good. I use Vanilla, i rec, starting with it

since its light and i personally can say it tastes good with milk or

soy milk.

NON-GMO (genetically modified).

My big personal problem : I am very poor. I have to scrub our

bathroom every week to get this, but its worth it even though I have

slight multiple chem sensitivty to cleaning products. My mom keeps

buying the wrong (I want plain) LEMON based cleaner, instead buying

LIME/RUST/SCUM super disenfectact - some really toxic crap that

makes me sick.

But really, I basically use my brain to figure out a way to make

money to get this and a few other special items (and out of

situations) since my body dont work 100%, but my brain has not been

effected by CFS (at all even! - in fact i feel very able to learn +

understand and comunicate,though obviously when I am overstimulated

I can't stay on one subject - it may be this nerountin i dunno, but

only certain things I am indeed limited so greatly in math for

example and in social settings I am the shy one like many others I

am not sure why, but I have no brain fog, yet - just dysfunction

lol.

I do have anxiety and agoraphobia though ever since my car accident

that sent me from CFS to full blown Fibro and TMJ and this has put

me into depression. I am starting desipramine for that (but

considering lexapro) which i requested as my research and Dr

Goldsteins research suggests it regrows the areas of the brain

involved in stress, which i cannot handle well at all. I refused

benzodizpines, way to dangerous IMO. Ive been on em and they are

just to additive, especially at my age, 22, its different for

someone older who can stay on them for quite awhile but Im not gonna

mess up my GABA receptors.

Neurontin seems safer based on my research and is actually one of

the best main or co treatments for CFS and FM. Research indicates it

blocks calcium influx (good for us, subs for magnesium in some ways)

and most importantly, at the spinal level it reduces

glutamate/calcium subtance P " irritation " which I think is the pain

and many other symptom reasons in CFS - substance P I think is sort

of like " nerve inflmation " which can include the spinal level and

whole body. Science and medical research hasnt yet caught up,but i

think there are at least 2 kinds of inflammation - the kind we know

that asprin or advil reduces, and that blood tests show, or a wound

etc.. and then central nervous system inflmmation and substance P is

the direct cause of the symptoms. Lyrica (pregabalin) is a potent

substance P blocker, and I eagerly await its release to the market.

I am confident my doctor who is very into experimenting (safely)

would prescribe it. After all, its neurontins big brother. Neurontin

absorps very poorly, but Lyrica fixed this and i hear is much much

more potent. I take 2400mg daily of neurontin. I sometimes feel

almst normal, if i get sleep, and with the LDN. Lyrica+LDN+diet+good

sleep and Dr Enlanders injections I hope may be the key for me and I

hope some of you.

I know we are all different subgroups, so once again my disclaimers :

Everything I said applies to my own opinions and knowledge and

research AND subtype of CFS so i encourage people to verify and

correct if needed.

I am not a medical doctor, do not follow my advice without a doctors

guidince etc,,

I have not cited references, i know..as I said in another post, its

just stored in my head so I dont feel the need to prove my knowledge

which BTW could be wrong - i am human and of course make errors, so

please, if you want, check and google and pubmed anything i said if

you are interested. If I made a few mistakes please correct me and

il give you a cookie :-) lol.

And Finally NIL - I hope i answered your question somewhere in

there , I think I did. Try to increease your sodium Cholride(if it

makes you feel ill, this is a good sign its a herx, also potassium,

and if possible, try to get magnesium sulphate injections, but if

not then use slow-mag brand supplement or chelated magnesium

suppllment mag-glycinate or mag-citrate or just eat green leafy

veggies. Cholorphyl's center is made of magnesium and we absorb mag

from food better than artifcial means typically. So no, i say you

have alkalinosis not acidosis. If you reply with more of your

symtptoms i may be able to help. Feel free to ask questions.

Anyone feel free. Oh, and sorry about the spelling or typing errors,

i can spell mostly, i just cant type honestly.

Well, " chorlophyl " (SP) was sorta hard. heh.

I hope at least 1 person gained 1 peice of good knowledge to help. I

cant believe i just typed all this. Whew. Sorry for repeating all

this stuff over and over sometimes. My mind revolves around CFS i

need to get a hobby or a job online or something. Any suggestions?

Best Regards -

And once again sorry for the babble/subject changes. I have no idea

why my mind is shifting like this. Anyone else get this from CFS or

Neurontin? Its also very late i stayedup all night, perhaps I am

just tired.

Take Care ,

JL

> > >

> > > Hi Nil -

> > >

> > > I'm 50 too. My stomach makes no acid. My thyroid & adrenals

> qualify

> > > as 'exhausted'.

> > >

> > > " Less adequate gastric protection " . I have experience with

that -

> I

> > > had a harrowing few months a couple years ago; the doc said my

> > > stomach lining had pretty much disintegrated. (That wasn't his

> word,

> > > I don't remember his word, my brain was pretty shot back then)

> Even

> > > swallowing a little water would bring horrible stomach pain

for a

> > > couple hours. Meds got switched to lotions, the whole bit. Long

> > > story, it gradually got better and is sorta normal now.

> > >

> > > Anyway. I took DGL before meals for a couple years. It coats

your

> > > stomach lining (esp nice if the lining is less than great).

Best

> to

> > > chew it slowly, let it mix fully with saliva. It's

*unsweetened*

> > > licorice. I love licorice, but this DGL is no candy. I should

> still

> > > be taking it. (guilt here.) I don't like the taste. It isn't

that

> > > terrible... Maybe I should try Slippery Elm?

> > >

> > > DGL is not instead of Betaine HCl, in my experience. DGL

protects

> > > your stomach and helps adrenals. Betaine HCl helps break down

> your

> > > food so the rest of the digestive system has a shot at it.

> > >

> > > When my stomach had recovered enough (almost a year) I resumed

> > > Betaine HCl with meals - while continuing the DGL before meals.

> (I

> > > take 1 HCl and 2 V-Zymes with each meal.)

> > >

> > > Hope this helps. Take care. -Lynn

> > >

> > >

> > > > " 1.. These individuals tend to digest meat poorly because of

low

> > > gastric acidity. They often think they have high acidity

because

> of

> > > occasional heartburn or heartburn with digestive enzymes

> containing

> > > digestive acid. The problem is usually not one of inadequate

acid

> > > production, but less adequate gastric protection. This could be

> > > helped by chewing or sucking on a specific type of licorice

candy

> > > called DGL or Slippery Elm. Suck or chew on it about ½ hr

before

> > > the meal. It produces increased secretion of gastric (stomach)

> mucous

> > > protective layer. This helps to prevent irritation by the acids

> in

> > > the stomach. "

> > >

> > > > (he is mentioning about adrenal and or thyroid exhausted

> people)

> > > > What does he mean by `less adequate gastric protection`? Does

> > > anyone have any idea? Is this true? in that case would this

mean

> I

> > > should use DGl candy or slippery elm to improve my digestion

> instead

> > > of Betaine hcl?

> > >

> > >

> > >

> > >

> > >

> > > This list is intended for patients to share personal

experiences

> with each

> > > other, not to give medical advice. If you are interested in any

> treatment

> > > discussed here, please consult your doctor.

> > >