Introduction: Dave G.

[Guest guest]

Hello, all!  May I introduce myself? And may I do so in a rather

lengthy way? I've not had much support along the way, and I'd

appreciate any thoughts that may occur to any of you, and just to feel

that there are some people who know what I'm going through.  I'm sure

it's very similar to many of your own experiences.

I've been reading this group, and posting on the LDNforFibro group

also, for just a week or so now.  Although there has been some

controversy, I've also seen some thoughtful comments, and I'd like to

be a part of this community.

Please call me " Dave G. " Dave is my middle name.  If I were to use my

first name, which is uncommon, I wouldn't feel free to reveal the

extent of my disability.

I live in southern Arizona.

Thanks to web forums like this one, I had read about LDN, and I

thought it sounded useful to me.  I googled LDN locally to find a

compounding pharmacy which carries it, visited that pharmacy and asked

for the name of a doctor who prescribes LDN.  I saw this doc and told

him that I wanted to try LDN for my CFS, and he prescribed 4.5mg in

capsules.  For some reason he said I should take one of these 3 times

each day, but I have taken only one, as I haven't wanted to deviate

from the protocol I've read about.  So I've been on LDN (4.5mg at

bedtime) for about three weeks now.  I had a honeymoon of two days,

feeling euphoric, and then maybe the herx set in, so that I've felt

about the same as before.

In addition to LDN, my new doc also added 200mg glutathione

sublingually (since it isn't active orally), 50mg CoQ10 as ubiquinol

(I chose to take that 3x daily), and magnesium malate, to my

supplement regimen, which lately includes Milk Thistle, St. 's

Wort, and 15mg lithium from orotate.  I always take some form of

multivitamin/multimineral; right now I'm taking one that was

formulated for mental health, that also includes gingko biloba

(antioxidant and for circulation) and DL-phenylalanine (a precursor of

norepinephrine).

Also, since 2005 or so, when I became aware of Dr. Cathcart's method

of ascorbic acid " titration to bowel tolerance, " I have taken, often

well shy of bowel tolerance, but anyway about 15 grams of ascorbic

acid (divided into 3 quarts water) most days, and sometimes much more.

 If I stop, my symptoms often get worse quickly.  Unfortunately this

self-medication masks (I think) many signs of disease, which often

makes me present like a hypochondriac because, in general, whenever

I've cared enough about myself to schedule an appointment with a

doctor, I also have cared enough about myself to self-medicate.

Basic lab work tends to come out fairly normal, especially any markers

of inflammation or infection; I imagine the ascorbic acid is helping

to reduce that.  In biochemical pathways charts, ascorbate appears as

a cofactor in many reactions.

My cognition has declined in stages over the last 18 years.  It began

at 19, feeling sleepy, what my dad described as narcoleptic.  I was

prescribed an SSRI that made me even sleepier and less productive but

worry about it less.  I still was able -- with great effort -- to

graduate a top-five school in my field (electrical engineering and

computer science).  Later I was able to be a middling engineer for

several years.  And for the last ten years I have ended up coasting

along, surviving on, alternately, my high-tech employer's stock-option

windfall [all spent up now], the hope of finding cures for myself and

others, and the reputation of my former " glory " in convincing

desperate employers to give me jobs that I couldn't really perform

adequately.

Meanwhile I learned enough that at one point I attempted grad school

in public health for four semesters. (I believed that the for-profit

healthcare establishment had too much conflict of interest.)  I think

the real future of medicine is in these peer support groups, because

for every additional fact published, there are an exponential number

of possible relationships to other facts.  With hundreds of thousands

of new biomedical facts published each year, to relate them all

together would take more than all the people in the world; so the

scientists and docs simply can't even begin to do it without our help.

Since 2003 I've developed problems in several organs, including:  new

heart arrhythmia and " myxomatous " degeneration of the mitral valve;

moderate to severe proteinuria, evidence of a kidney problem; multiple

major joints developing bursitis and, variously, lax or torn ligaments

for no apparent reason (other than a brief cessation in my ascorbic

acid protocol); and liver swelling and elevated liver enzymes.

I now consider myself to be disabled, and I wish I hadn't been to

proud to apply for disability ten years ago, or five years ago when

someone told me it was too late already. According to my social

security statement, as of December 2009 I still was eligible for

$1800/month in SSDI, but by the time I would get approved and get back

pay, how would I have been paying for living expenses and all the

supplements I need, on the $900/month that SSDI lets you earn? It

would be easier for me if I didn't know that these supplements help so

much, since the state's free health care, or Medicare or Medicaid,

will not pay for them.

Given that I'm broke, not on disability, and probably unable to get

well while living on what disability pays, it feels especially urgent

that I cure myself in the fastest possible way. I have a little money

left in my IRA, and I'm prepared to spend it, either to get effective

treatment or even to get me a diagnosis that will more quickly get me

approved for SSDI.

Deeper down, I consider all diagnoses of incurable diseases to be

throwaway diagnoses.  As a possible cause for all of this, I have

suspected chronic infections, since reading W. Ewald's book

/Plague Time/.  My CFS-like symptoms had begun at age 19, after a case

of pneumonia treated with immune suppressant drugs, then all this

again the following year, and then shingles treated with an antiviral

(maybe acyclovir) and more immune suppressant drugs.  Conditions then

seem to have been ripe for establishing chronic infections. And

continued stress from putting all my energy into a career that I never

liked much (I know, join the club)... surely didn't help.

I've been tested for heavy metals. Hair tests have shown acceptable

levels of mercury and lead, but a 24-hour urine test for mercury, with

DMPS challenge, was confounded by the fact that, due to kidney

impairment, I pee 3x as much as their " 24 hour " jug holds.  So in 24

hours I may excrete 3x more mercury than they measured; but they

didn't take this into account. Thus my mercury levels may be 3x higher

than the lab states they are.  If I knew whether it was organic or

inorganic mercury, I could figure out how to chelate it, I think. I

eat a lot of fish, and vaccinations have caused me some serious

aftereffects. (I got the box from one, indicating it contained organic

mercury and aluminum.)

I used EDTA suppositories to shrink my prostate, which ten years of

Saw Palmetto had not shrunk; but I understand that EDTA may have

interacted with mercury to my detriment. I do think I feel more

" spacey " after using them. (This could be due to loss of some trace

mineral, but I've taken a lot of trace minerals since then.)

A few years ago, after using 1,000mg niacin doses for intense

vasodilation, with ascorbic acid, garlic, and lithium orotate (I was

trying to get these antimicrobial substances into small

previously-blocked capillaries) my skin became chronically dry for a

long time. This protocol converts some fatty acids to prostglandins,

so it can deplete them.  I wish I knew which ones I need most now:

omega 3, 6, 7, or 9? I guess there is a test, if I can afford it.

Whenever I've taken anything designed to boost serotonin levels, I've

felt more depressed. The etymology of the word, serotonin, means

vasoconstriction, and I suspect that my depression is (as some are)

related to reduced blood circulation in the brain. I will be starting

bromelain soon, and eating natto, to lyse fibrin, and would appreciate

other suggestions.

For reasons difficult to explain -- but involving a special

relationship to chocolate -- I believe that dopamine and

norepinephrine are the monoamine neurotransmitters I need most.  I

noticed today, in a biochemical pathways chart at

http://www.g-language.org/g3/ , that cofactors in production of

dopamine and norepinephrine (which I seem to crave) include iron and

copper.  For years, I had been trying to avoid those minerals (they

can be pro-oxidant, especially in presence of ascorbate) so it's very

possible that I can supplement with them and get improved moods as a

result. So I feel optimistic about that.

I've never been tested for any chronic infection other than EBV and

Lyme, and the Lyme test was one of the standard (not very sensitive)

tests.  The stronger my suspicions are, the more likely are doctors to

" push back " by discounting my suspicions.  (In their defense, perhaps

they think: " This guy has had this idea, and where has it gotten

him? " ) I could use some coaching in how to make doctors think that

they are the ones who thought up the idea of this or that.

In general, for a guy who has had excellent insurance (not anymore),

and who used to earn a really decent salary (not anymore) I've

received woefully inadequate medical care since my " CFS " (or whatever)

onset.  I've seen both conventional MDs and many kinds of alternative

doctors, for periods ranging from one visit to 2.5 years.  I tend to

get angry, clam up or bark out my words, storm off, and try to

self-diagnose and self-medicate.  ly, as smart as I may be

sometimes, most of the time my mind is pretty fuzzy.  I manage to make

sense only by reading things over and over, and writing about them

over and over.  I hope that you folks will be patient with me, and I

will try to be careful and patient with you.  I look forward to us

learning from one another.

Dave G.

P.S. This biochemical pathways chart fascinates me to no end.  Roche

sends it out free of charge to university students in life sciences,

and if you know someone who is one, perhaps they can order it for you:

https://www.roche-applied-science.com/servlet/RCConfigureUser?URL=StoreFramesetV\

iew & storeId=10202 & catalogId=10202 & langId=-1 & countryId=us