New member: 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 so far, 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 mostly similar to your own experiences.

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. And I like to pretend that G stands for " Germ-theory. "

I live in southern Arizona. I'm a man, just shy of 40 years old. And I have a

diagnosis of CFS.

CFS may not be the most complete diagnosis for me. My new doc mentioned that

some other conditions should have been ruled out first. I have reasons to

agree:

1. I've come to suspect MS, because of the progressive nature of my cognitive

impairment over the last 18 years. (At, first I still was able -- with

considerable sacrifice -- to graduate a top-five school in my engineering field;

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.)

2. I've suspected lupus, because I have dysfunctions in several organs

(including proteinuria, evidence of a kidney problem; liver swelling and

elevated liver enzymes; a new heart arrhythmia and " myxomatous " degeneration of

the mitral valve; and multiple major joints developing bursitis and lax or torn

ligaments for no apparent reason).

I sought and found a doctor who would prescribe LDN (Low Dose Naltrexone) and

I've been on LDN (4.5mg) for about two weeks now. In addition to LDN, my new

doc also added 200mg glutathione lozenges, 50mg CoQ10 as ubiquinol, and

magnesium malate, to my supplement regimen, which lately includes Milk Thistle,

St. 's Wort, and lithium 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 and PEA.

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 C is helping to reduce that.

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 an attorney I just consulted, it's not too late yet,

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

on disability, 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, and as a possible cause for all of this, I have suspected one or more

chronic infections, ever since I read 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 the lab 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 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've felt more " spacey " since using EDTA. (This could

be due to loss of some trace mineral, but I've taken a lot of trace minerals

since then.)

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. In my

experience, 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 for a while now, and where has it gotten him? " ) I

would appreciate some coaching in how to make doctors think that they are the

ones who thought up the idea of this or that! Or in how to find one (other than

expensive trial-and-error) who can give me the confidence that he understands my

case better than I do.

In general, for a guy who has had excellent insurance (but no insurance now),

and who used to earn a really decent salary (but now just Unemployment, running

out in early December) 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 would appreciate any suggestions you may have, for how I should go about

getting better care. If I can't find a good doctor soon, I'll order antibiotics

(without prescription) from a foreign pharmacy and put myself on the protocol

described at cpnhelp.org.

Dave G.