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28. How did this happen?

28. How did this happen?

The first serendipitous event that led to my discovery that LDN could “cure” 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 who I had gone out with 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 Billy Joel 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:

Douglas Goodin, M.D.
Medical director, Multiple Sclerosis Center

Dr. Douglas 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 made a mental note of it 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 asked him to prescribe me the Tysabri. He agreed to do so. I then remembered and asked him about the patient funded LDN study that had been done at UCSF which I had read about online. He told me that he hadn’t expected any results, but that the study had shown some after 8 weeks.

He agreed I might as well try that too. When I asked him about possible conflicts taking it together with the Tysabri he kind of laughed and said the dose was so small there was nothing to worry about.

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 which I felt no 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,

David 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 Moore in September 2008.

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.

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July 26, 2008 - Posted by | Uncategorized

3 Comments »

  1. I heard about LDN on an MS website, asked what they were talking about, researched it, and got my neurologist to prescribe it. She had just told me that as a secondary progressive no meds would help me. I had avoided the DMD and depended on diet and nutrition for years but got away from following them and had gone to a wheelchair because of leg problems. I started LDN in April 2008 and had immediate improvement of bladder, fatigue, temperature fluctuations and feelingr in fingers and toes. There is much hostility in the cyber MS world to LDN, but the word continues to spread. Thanks for telling your story.

    Comment by Jeanne Foster | July 31, 2008 | Reply

  2. I have just started LDN. After extensive internet searching and researching my Dr. gave me a prescription. I have had 7 days on 3 mg and can report magnificent results. I am passing the word to fellow MSers here in Colorado Springs. All are quite excited and interested in pursuing this themselves. Some will be using me as a guinea pig before they jump in with both feet. I was dxed 10 years ago today 7-31-98 as PPMS. I have seen too much progression in the past three years. Have even undergone surgery to implant a baclofen pump which is going well so far. Am thrilled with what LDN is doing for me and look forward to continuing improvement. Thank you very much for sharing your experiences and knowledge of LDN. Wishing you continued good luck. Take good care. Gail Toupal

    Comment by Gail Toupal | August 1, 2008 | Reply

  3. Oh boy….it’s so wonderful to see someone who can “take the bull by the horns” so to speak with regards to getting this the story of LDN out there. I found out about it in 2002 and decided that everything about it screamed at me that it was something that I should try. Little did I know that it was going to be an uphill battle to find “forward thinking” doctors that would look at this and say that it could do no harm so why not try. That was 6 years ago and I was lucky in that I did find such a doctor. I learned that most of the neurologists were firmly entrenched in the mainstream model of what should be used for MS and they were not going to budge in their stance. I found a wonderful internist that looked at what I presented and said that he had one other MS patient and maybe this could help her as well. I knew I had a doctor that was able to think on his feet instead of just being a “cookie cutter” in his field. I’ve been taking my little 4.5mg LDN capsule for just over 6 years now and do think it’s the best thing going for MSer’s. I feel that we all certainly have a right to ask for it and I do encourage people all the time to take control over their health, be proactive and don’t take no for an answer. If their doctor is not open to it, fire him and find one that is able to think it through enough. I’ve been maintaining a spreadsheet of doctors to refer to those that e-mail me. This is no different then if someone walked up to me on the street and asked me to refer them to someone that could help them. I would love to add more names to my list because my only disappointment is when someone asks for a name in a state where I have no one.
    God bless those doctors that are thinking more about their patients and less about trying to fit into the Big Pharma mold. I have not had any sort of MS attack in those 6 years. I don’t think that it has completely halted the progression but I have led a very normal life with some minor adjustments in how long I can walk but I’d say that’s pretty darned good. I attended the very first LDN conference and do applaud the good work of Dr. Gluck who has been trying for all these years to get the good work of Dr. Bihari into the hands to those that need it.
    I’d love to see more of what you can do to share this news with the world. Feel free to e-mail me wkendz32@hotmail.com

    Comment by JoyceF | August 15, 2008 | Reply


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