Chapter 23. How did this happen?

[Guest guest]

23. How did this happen?

The first serendipitous event

that led to my discovery that LDN could stop Progressive Relapsing Multiple

sclerosis stands out from the rest. This

was about a month after my watch was "on too tight."

I was sitting out on the rattan

swing outside my office. It was my

favorite place to listen to lecture series on my Ipod. Where we live, Bonny Doon outside of Santa

Cruz is a mountainous area covered with Redwood trees.

I would stretch out for hours at

a time, the swing barely moving. While

listening, I got to soak in maybe 200 varieties of lush plants that cover every

available centimeter of ground. I was

right next to our sloping driveway and my favorite thing was to chuck my still

smoldering cigarette butts onto it without having to bother to stub them out

first.

I guess it was my way of feeling

"wicked" at the time, which shows you just how thin my life had become at that

point. Naturally, I would sweep them all

up later, but it gave me a real sense of freedom to be able to flick my buts

away without a care.

The cordless phone next to me in

the swing rang. I fumbled to pause the

Ipod and answered.

I couldn't believe the sound that

came out. "Joe?"

I instantly recognized the voice,

"Oh my god, Dianne?"

Diane Fenner had been my

girlfriend for about four years in college and law school. We had almost, but not quite, gotten

married. I had not heard her voice in

over 20 years, but there are some sounds one never forgets.

"It's been… How long, more than

20 years for sure? Why are you calling

me now?"

"I don't know… I just felt like it."

She wanted to catch up on what

had happened in my life. I took a deep

breath.

"I'm sorry Diane, I've had the

luckiest life one could ask for; it's just that I've recently been diagnosed

with Relapsing Remitting MS."

I went on to explain that it

wasn't the MS that was worrying me at the moment but the operation I had

scheduled in 10 days to replace part of my neck with a titanium frame and some

dead guy's bone material.

Because my afflicted left arm has

no reflexes rather than the hyper reflexes associated with MS, my neurologist

believed it was being caused by the spinal compression that showed up in the

MRI, rather than the MS which had shown up as lesions on both my brain and

spinal cord.

"I don't do well in operations,

Diane. The last one I had almost killed

me."

I was referring to the abdominal

surgery I had had in Los Angeles to sever "adhesions" left from an unnecessary

appendectomy I had had at Hadassah hospital in Jerusalem at the age of 17.

My problems with the medical

profession go way back…

She sounded a bit crestfallen by

the news. I tried to cheer her up by

describing all the wonderful things about my life in Bonny Doon. How incredibly

peaceful it was… How we didn't even have

a key to lock the house… How my kids

didn't even know what danger was… etc.

"I don't get it. But what have you been doing?" She wanted to know.

The truth of the matter was that

I hadn't really done anything in the

7 years since 9/11 when I got hit with the depression. The depression had been augmented by a long

bout with panic attacks that had rendered me effectively useless.

At the time, after I figured out

what was happening to me, I had assumed it was just a reaction to the natural

fear prompted by the attacks. I had left

Israel 5 years earlier to get as far away from Islamic insanity as I

could. The anthrax business had hit me

the hardest.

There I was, in the safest, most

remote place imaginable and I was scared to death to get my mail out of the

mail box. I used surgical gloves

handling it and would stand by the outside garbage to slice out only the

necessary interiors of the mail I knew

I needed. The junk mail and the

envelopes went straight into the can.

After months of this, and months

of talk-talk therapy, my therapist gave up and told me to go to an MD to get

chemical aid. I was given Prozac and

Xanax and managed to finally get the symptoms down to a tolerable level. But a deeper damage had remained.

Since that time, I was unable to

function properly. I spent all my time

studying philosophy and science. My wife

was making us money on the internet. I

was content to retreat to my world of abstract thinking and avoid anything real. The first half of this book demonstrates

precisely the kind of things I absorbed myself in.

I had become your classic luftmenchin, (Yiddish – lit. "flying

man").

Diane couldn't make any sense out

of what I told her. She remembered me

most as epitomizing the song "Angry Young Man". For good reason. Chairman of SDS at Columbia College. Joining the Israeli Navy after finishing

Columbia Law School. The list goes on and on.

Diane knew me as an idealistic

man of action. The bemused, gentle

scholar she was speaking to now just didn't fit. I defended myself. I thought I had grown past that stage in my

life. Age and wisdom had taught me the

essential pointlessness of my old patterns and I was much happier this way, I

explained.

She didn't buy it, but all of a

sudden she grew quiet.

"Wait a minute… I don't BELIEVE

this!" She almost shouted.

"What are you talking about?"

"I just remembered…" Her voice

grew serious and hurried. "The very first case I won after finishing law school

concerned a woman who had your exact same diagnoses."

Diane had been studying for her

PHD in psychology when we had broken up.

She had gotten the degree, but after a short time working in the field

had decided that it was a dead end. She

then went to law school, got her JD and had since become a very successful

lawyer who specialized in lawsuits against drug companies.

The case she was remembering

concerned a woman who had been diagnosed with the identical spinal condition

that my MRI showed. It had some 14

syllable, unpronounceable name which she pronounced with ease. It had resulted in the exact same "dead arm"

symptom that I was suffering from.

The woman was told she needed the

same operation that I was scheduled for, (another unpronounceable string of

syllables). After the operation, they realized that in fact she had MS. The stress to her body from the operation

caused her to have a major relapse. She

had walked into the hospital, and had come out in a wheelchair.

"Joe, they didn't even go to

deposition. They just caved and

paid. It was that open and shut."

Not that different from my case,

I thought, though I had already been diagnosed as having both conditions. But this news reminded me of a great truth

that in my fear and suffering I had forgotten…

Doctors are HUMAN. They make MISTAKES. What if they were wrong and my dead arm was

being caused not by the spinal compression but by the MS? I could end up like that first client. Or maybe worse…?

"Damn…. I better think about

this." I had been looking for an excuse

to avoid the operation, and this was my chance. "Maybe I should see an MS

specialist. I'll try and find the number

one authority on the west coast. If he tells me my condition can't be caused

by MS, I'll go ahead with the operation."

Diane was enthusiastic about this

idea. So was I. The operation loomed over me as a possible

death sentence. This gave me hope for a

commutation.

So I followed up on this

conversation that fell on me out of the blue after more than 20 years. I began researching to find this mythical

"number one specialist" on the west coast.

It didn't take me that long to find him.

Here's the listing for him at

UCSF:

Goodin, M.D.

Medical director, Multiple Sclerosis Center

Dr. Goodin, director of the Multiple Sclerosis

Center at UCSF Medical Center, is a neurologist and an internationally renowned

expert in the treatment and research of multiple sclerosis.. He earned a

bachelor of sciences degree in genetics and biochemistry at the University of

Washington in Seattle; a master of sciences degree in molecular biology at

Purdue University in Indiana; and a medical degree from the University of

California, Irvine. He completed a residency in neurology at UCSF where he

joined the medical center staff in 1982. In addition to multiple sclerosis,

Goodin's research interests include various forms of dementia. Goodin also is a

professor of neurology at UCSF.

I noticed in a little side box a

mention that a "patient funded study" had been done on the effects of LDN on

multiple sclerosis. In the box, it said

that the study had been completed, but it had no mention of the results. I had never heard of a "patient funded study"

before, and I made a mental note to ask Goodin what the results had been, and

thought no more about it.

When I got in to see Goodin, a

few days before the scheduled operation, I asked him, "If you tell me my dead

arm couldn't be caused by the MS I'll have the operation."

"I can't tell you that," he

replied, "In fact I think it is being

caused by the MS?"

"What about it having no reflexes instead of hyper reflexes?"

He answered that though hyper

reflexes are usually the case, MS can sometimes cause no reflexes as well.

Utterly relieved, I canceled the

operation. I also noted to myself what

makes an expert.

Experts know all the exceptions to the rule as well as the

rule.

I forgot to ask about the LDN box

on the website as it was decided that I should begin on the copaxone.

In April, a little more than two

months later, I began to panic after the major cognitive problems began to

emerge. I also decided I had to give up

the copaxone because of the horrible reactions I was having at every injection

site.

I went back to Dr. Goodin and had the exchange described in the previous

chapter.

The almost "afterthought" way in

which he treated the LDN made me think that there was nothing much to expect

from it. I'd take it because there was

nothing to lose, even though there wasn't much to expect, either.

A month later, the cognitive

problems continued to worsen. I began to

do research on line in earnest. The

kinds of problems I was having should not be caused by the small number of

lesions that had shown up on my MRI.

I came across three abstracts

that described the characteristics of people with the rare form of MS,

progressive relapsing. These included being

male, being older, and having "spinal atrophy". Most MS patients are female and

are diagnosed before turning 40.

I didn't know what "spinal

atrophy" meant, but when I returned to UCSF to present them with this possible

diagnoses I found out it was just a fancy word for the spinal compression that

had almost gotten me another unnecessary operation.

After the usual resistance to

listening to anything a patient might contribute to his own diagnoses, the

doctor there sadly agreed that PRMS was probably the best diagnoses. Unfortunately, since there was nothing that

could be done for the progressive part of the MS, it was decided I should go

ahead with the Tysabri to at least try to prevent relapses.

It was now June, and I was going

to be off to Peru in another month. I

finally get word that UCSF was ready to give me the Tysabri. I met with Grace, my GP, together with Bob

and we decided it would be best to delay the Tysabri treatment until my return.

The concern was that no shaman

could possibly know about the Tysabri and whether there might be conflicts with

the ayahuasca.

Soon after that, Bob dumped me

for having begun smoking again. I was

forced to choose what I wanted to do and I chose the Buddhist dana paramita rather than the shaman

approach. I would volunteer full time

for Barack Obama.

When Obama failed to lead on the

FISA issue, and instead caved in to the Republican talking points, I felt as if

the rug had been pulled out from under my feet.

I had already made contacts within the campaign and was preparing to

spend my time up until the election convincing Jews in Florida to vote for

Obama rather than McCain.

I talked it over with my son

Barak. He said that though he felt Obama

had made a serious mistake, there was still every reason to work for him. "Abba, this election is probably the most

important election…" He paused and thought for a while before finishing, "Maybe

ever."

I knew he was right. The US was going into a major nose dive

because of the catastrophic policies of the Bush administration. We were headed for some unavoidable very bad times no matter what. The only question was whether it could be

turned around before it would destroy the foundation of the world as we knew

it. Maybe Obama could do that much.

My problem was that I knew I

simply couldn't get up in front of an audience and urge them to vote for a

candidate for whom I felt less than total enthusiasm.

A few days later all my symptoms

disappeared.

So here's what's needed to have

happened for me to have found out what I found out about LDN.

1.

Diane

needed to call after 20 years to stop the operation.

2.

UCSF

needed to have done the LDN study for me to have heard of it.

3.

Goodin

needed to be flip about LDN or I might have researched it and had high

hopes. That could have raised the issue

of the placebo effect in my cure.

4.

I

needed to have had horrible cognitive problems to figure out I had PRMS.

5.

UCSF

had to have bureaucratic problems to allow for the Tysabri delay.

6.

I

needed to be planning to do the ayahuasca, or I would have begun the Tysabri.

7.

Bob

had to blow me off for smoking.

8.

I

needed an Obama-like focus to decide to try dana

paramita rather than the ayahuasca.

9.

The

symptoms had to disappear when they did or I would have credited the Tysabri

rather than the LDN.

On July 16, I realized that the greatest chance at dana paramita has just been handed to me

on a silver platter.

On my blog I receive the following comment:

Dear Joe,

As editor/owner of http://www.ldninfo.org I was delighted to see your fervent

message. Someone who has not only experienced LDN but also is a gifted writer

is a real find! We're counting on you to tell the world.

As a retired internist, my personal hope is that once we can point to a few

convincing medical journal articles (at least two more are due this year), we

should be able to jump all over the health-related committees of Congress to

force them to modify the current damaging system of approvals run by Big Pharma

and take advantage of LDN's enormous possibilities for the public's health.

Regards,

Gluck, MD

Unbelievable… The "miracle cure" that I was going to try to find in Peru was

available at the corner drug store for about a dollar a day.

It is a cliché and a truism, I know.

But I have just experienced the fact that the greatest "miracles" of

life often manifest as mundane routine.

It

feels as though because I was searching for something to do for the world as a

way to find my cure, my cure was handed to me as a way to help the world.

I'll never stop being a rationalist, but there are some weird things that

happen in life that we can't or maybe shouldn't ignore. I feel like I owe.

This book is no longer a journal of a desperate man. It has become a call to arms to spread the

word of how LDN can help not only MS sufferers like me, but also all people

suffering from any immune system disorder.

That's an awful lot of people. I hope

I'm up to the task. It's so big, with

such enormous consequences that it makes me wonder again about my sanity. Grandiose ideas rarely lead to anything other

than disappointment.

My first attempts to get the word out on my MS support forums have met with

mixed success. The pharmaceutical

companies have clearly loaded the forums with reps to push their expensive and

ineffective treatments. I have been

repeatedly and viciously attacked for trying to get the info out.

Not all the responses have been like that, for sure, but enough have been

that way to make me understand that it is not going to be easy for me to spread

this truth that was dropped on me from I know not where.

There are literally billions of dollars at stake here that are not going to

be surrendered without a fight.

But at least I'm not alone. There's

at least one other book scheduled to come out called The Promise of Naltrexone by Elaine in September 2008.

It's a book intended for physicians with all the scientific evidence to

back up trying LDN.

I intend to try to get this book out

for Christmas. With two books being

promoted and the new studies getting published, it's at least possible Dr.

Gluck's plan to pressure congress will come to something.

I haven't been involved in a "fight"

for a long, long time. The last big one

was volunteering to return to Israel from LA to fight with my old Navy unit in

the first Gulf War.

This time it will be somewhat

different. I will try to use what I have

learned during my illness to help me make the "fight" not a fight at all.

During the times to come I will try

to use as my guide Lao Tzu's Tao Te

Ching.:

The sage does not distinguish between

himself and the world;

The needs of other people are as his own.

He is good to those who are good;

He is also good to those who are not good,

Thereby he is good.

He trusts those who are trustworthy;

He also trusts those who are not trustworthy,

Thereby he is trustworthy.

The sage lives in harmony with the world,

And his mind is the world's mind.

So he nurtures the worlds of others

As a mother does her children.