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27. Miracle Cure?

27. Miracle Cure?

It’s hard for me to believe it myself. For the last month or so I have been symptom free!

  1. No urinary urgency…
  2. No balance problems…
  3. No memory problems…
  4. No ADD problems…

Huh?!!!!!

If I had confidence that it would continue, it would certainly qualify as the “miracle cure” I have been seeking.

What seems to have brought this state of affairs about (believe it or not) is my own research into medications, combined with my planning for the aborted ayahuasca treatment.

I had been waiting for two months for UCSF to get its act together regarding the Tysabri treatment. In the meantime I had started taking a treatment called LDN, (Low dose Naltrexone).

When I went to ask for the Tysabri, I also asked my doctor if I could try the LDN. I had found out about it online and there was lots of anecdotal evidence that it had helped people with MS. At the time I had little hope it would help me, but I figured it couldn’t hurt to try it too.

Naltrexone is a drug used to help recovering addicts. The only dosage manufactured is 50 mg, so I had to find a compounding pharmacy to make up the 4.5 mg dosage that the treatment called for.

Because of the long delay in getting the Tysabri, I decided to wait until after Peru before beginning it. It involves a massive infusion once a month in a hospital. The thinking was that it was best to avoid mixing other chemicals in my body during the ayahuasca sessions in order to avoid potential bad interactions.

Tysabri is considered a second line treatment for MS. Although it has by far the best track record of reducing relapses, (67% reduction as opposed to 30% for the other approved treatments) one needs to get special dispensation in order to get it.

This is because Tysabri appears to interact with other immune-modulating drugs to cause progressive multifocal leukoencephalopathy (PML), an often-fatal opportunistic viral infection.

I had been willing to take the risk, though. I couldn’t continue down the path I was on.

The other research I did was looking for a replacement for the Provogil. Although it made me feel more awake, it did nothing for my ADD symptoms. Additionally, I need 400 mg a day of the stuff and I was concerned about potential interactions with the ayahuasca.

I began searching for a drug that would give me the most “bang for the buck” in terms of effectiveness for the dose. That was when I discovered Desoxyn.

This was the line in Wikipedia that convinced me to try and get it.

Further, because the secondary effects of dextromethamphetamine hydrochloride (Desoxyn) are least among the amphetamine-class stimulants or methylphenidate but the highest degree of primary effectiveness (i.e., most effective at enhancing concentration and decreasing distractibility, with the least occurrence of side effects), Desoxyn can be useful for patients who find other medications ineffective or for whom the side effects of such other medications are too severe.

Apparently, one needed to take three times the amount of Dexedrine to get the same effect as that provided by Dysoxyn.

My doctor did not feel qualified to prescribe it so I went to a psychiatrist who treats people with ADD. He had never even heard of the drug, but after reading up on it, agreed to give me a two weeks supply as a trial.

The bottom line? As a result of preparing for the ayahuasca cure, I ended up on LDN and Desoxyn and nothing else. I’ve now been on LDN for about 4 months and Desoxyn for about a month and a half.

I never expected the LDN to affect my ongoing symptoms. I was taking it on the off chance that it could help reduce my chances at a relapse. But one day I noticed I needed to pee and when I went to the bathroom I was amazed… It kept coming and coming!

Thinking it over, I realized that I hadn’t had to pull over to the side of the road to relieve myself for a long time. How long had it been? Two weeks… A month… WOW!!!

I couldn’t believe my luck! It was the last thing I had anticipated. Thinking it over, I realized that I hadn’t had any real balance problems lately either. Was it possible the LDN had taken care of both symptoms? I could think of nothing else that could have helped.

If LDN is that effective at such tiny doses with zero side effects, why isn’t it the FIRST drug that is prescribed for MS? Clearly I was not the first person it had helped, but it wasn’t even recognized by the FDA as being a legitimate treatment for MS.

My God… There could only be one answer that made any sense. The pharmaceutical industry!

Here’s what Wikipedia says:

Low dose naltrexone (LDN), where the drug is used in doses approximately one-tenth those used for drug/alcohol rehabilitation purposes, is being used by some as an “off-label” experimental treatment for certain immunologically-related disorders, including HIV/AIDS, multiple sclerosis [6] Parkinson’s, cancer, autoimmune diseases such as rheumatoid arthritis or ankylosing spondylitis, and central nervous system disorders.

What they fail to mention is that naltrexone has been out of patent for 20 years or so. It’s available as a generic and even with the special compounding required, a four month supply cost me $25 copay.

The Copaxone injections, that I had been using when first diagnosed, cost $1,500 for a month’s supply. The Tysabri would have cost around $3,000 a month. I would have needed to keep taking either of those drugs for the rest of my life.

Ask yourself, if you were a drug company which would you rather sell? LDN at $10 a month or Tysabri at $3,000 a month?

Before the internet, there would have been no way at all for me to even find out about the existence of LDN. As it is, it is never even mentioned on most of the MS sites. It is never mentioned as a treatment on a par with the standard ones.

And yet, in my case it was clearly much more effective than the Copaxone which had left painful cyst-like nodes everywhere I injected it which had remained for about three weeks. That’s why I quit using it. It was incredibly uncomfortable and somewhat scary.

The other main drug used for MS is Interferon. I had chosen Copaxone over Interferon because the main side effect of the Interferon is flu-like symptoms. Who the hell wants that?

As I mentioned earlier, the Tysabri has been linked to fatalities from PML. Wikipedia lists its common side effects as fatigue and allergic reactions with a low risk of anaphylaxis (severe life threatening allergic reaction) headache, nausea, and colds.

Given that it works without any side effects, why isn’t LDN the obvious FIRST CHOICE for treatment of MS?

The excuse given is that the evidence supporting LDN is merely “anecdotal,” it never having been properly tested. Anybody want to guess as to why no tests have been done on it?

All of us have read about how the pharmaceutical industry is interested in making money rather than actually helping patients. Now I was experiencing it firsthand !

As big as a surprise as the LDN was for me, the Desoxyn was even more of a shock.

Within a few days of substituting 20 mg of it for the 400 mg of Provogil I had been using, I was back to a fully functioning brain. After two weeks and raising the dose to 40 mg a day I can honestly say that I haven’t felt or functioned better for as long as I can remember. At least ten, maybe fifteen years.

  1. No more getting lost in town…
  2. No more forgetting everything…
  3. No more daily exhaustion at 5 PM…
  4. No more technophobia…

It seemed like every symptom not handled by the LDN was knocked out of the ballpark by the Desoxyn.

Originally I had asked for the Provogil because I wanted to avoid amphetamine based drugs. All of us have heard about the problems caused by “speed.” Its illicit use has been labeled an “epidemic” in the US by the press.

We’re all are so scared of the stuff that when I asked on the Patients Like Me forum whether anyone had tried using it to treat MS related ADD symptoms, I was almost banned from the site. All sorts of ignorant, hysterical attacks on me. And this was just for asking about it…

The reason I had asked was that no one there knew anything about Desoxyn. All Desoxyn is is pharmaceutical grade methamphetamine…. Speed.

I don’t want to be addicted to anything. I don’t want to be turned into a toothless, manic scarecrow. I don’t want to have to use more and more of a drug to have it be effective.

All of the above are what we have been taught to expect from speed. Undoubtedly it happens to some people who get hooked on the stuff. What I didn’t know was that when used by people who actually need it, it has no such side effects. Wikipedia again:

As with other amphetamines, the majority of these side-effects are uncommon in therapeutic use, with the exception of growth retardation in children. Desoxyn also has a higher benefit relative to the incidence of side-effects than other amphetamines.

So the bottom line with Desoxyn is that no one uses it because of false fears generated as a side effect of the government’s war on some drugs.

This is really OUTRAGEOUS if you think about it. All my symptoms from MS were made to vanish by two readily available drugs. Few MS sufferers know anything about either of them. They go on spending thousands of dollars a month on drugs with severe side effects that don’t work as well.

I have got to get this information out to everyone… Talk about dana paramita!

Just in time too… I was planning on volunteering full time for Barak Obama, but after his betrayal on FISA I’ve been unable to work up any real enthusiasm for it.

A chance to really help a lot of people out there has just been handed to me on a silver platter.

It also has handed me a real reason to finish and promote this book. After deciding not to do the ayahuasca cure, I thought that the book was probably going to die on the vine. The main interest of my target audience would have been in the psychedelic/spiritual aspect of my “miracle cure”.

Now, though the “cure” I accidentally discovered may be prosaic, it is available easily and for much less money than what MS sufferers are currently paying for drugs that have needless, awful side effects.

That is potentially much more helpful than anything I could have discovered with the ayahuasca.

So as a result of Bob’s blowing me off, instead of losing my chance for a miracle cure, I discovered a cure that was right there all along. There’s the twofold bonus of having a new raison d’être for this book as well as a raison d’être for me.

Lao Tzu summed up my circumstances in chapter 58 of the Tao Te Ching:

Disaster is what blessing perches on.

Blessing is where disaster abides.

Who can say what the ultimate end of all possibilities will be?

Appropriate means soon become unfitting.

Good means soon turn to evil.

July 16, 2008 Posted by | Uncategorized | 20 Comments

26. Back to Square One ???

26. Back to Square One?

It’s now June 10th, and I am finally able to write the next chapter. About a week ago, I met with Bob after my return from Palm Springs. We had a few bowls at his place and then walked to have lunch at the local health food store a few blocks away.

I told Bob that I was now following 4 tracks when it came to my illness: Western medicine, alternative medicine, Buddhism, and the shamanic cure in Peru. I thought it was a fine meeting. Clearly, Bob thought otherwise.

Four days ago I received the following email from him.

Dear Joe,

It was good to see you yesterday, but I have to say I am very sorry you’ve relapsed into smoking cigarettes. I see this as symptomatic of a larger problem.

As I have said before, in spite of the things you say, it seems to me that you do not truly or sincerely intend to make yourself healthy.  A person who knowingly inhales poisonous gas into their lungs while giving money to the world’s most wretched and evil people so they get more children addicted to their deadly drug, is not on a path of health or sanity.

They are, instead mired and confused in a profoundly dysfunctional ego.  You are making a great effort to rationalize all this, as if you were a rationalist.

But you are not a rationalist Joe. You are a rationalizer who makes elaborate excuses and tries to talk themselves and others into believing what you dearly wish was true, but in my frame of reference, is not.

I am not sure what to do.  While I think ayahuasca is, or could be useful for helping someone deal with their addictions and their rationalizations, it is not the trip I signed on for.

I do think that ayahuasca can help your condition if used in a certain way that I have spent many hours, days and weeks, trying to convey to you.  If or when you decided to embark on such a healing journey, let me know.

With love,

Bob

The email hit me like a sledge hammer. What was I going to do now?

There were three possibilities that I could see. One, I could stop smoking again and make Bob willing to go with me again. Two, I could arrange to go on my own. At this point I have enough contacts to make the trip without him. Finally, I could forget about Peru and instead volunteer to work full time to elect Obama.

I have chosen the final option.

At the risk of being a “rationalizer,” I’ll try to explain my thinking again.

In the last chapter I mentioned that looked at the right way, MS could be seen as the best thing that could have happened to me. It got me off my ass to start writing this book and the two blogs I have created. That made me feel good about myself for the first time in years.

In Buddhism, the first Paramita (perfection) that one should cultivate is that of Dana. Dana, or generosity, is encouraged as an essential attitude. This is the best way of offsetting the human tendency of individual self-centeredness and attachment.

But Suzuki, in Zen Mind, Beginner’s Mind goes much further than that. Dana paramita is more than simple generosity. It comes from the realization that everything in the universe is one. As such, there is absolutely no reason to cling onto anything. You are the same as everything around you. As such, it is in your basic nature to be generous. Fear and ignorance confuse us into thinking it’s preferable to place one’s self first in the scheme of things.

It is this pointless “clinging” that Buddhism tells us is at the root of our suffering.

In chapter 13 of the Tao Te Ching, Lao Tzu puts it plainly:

What is meant by saying that the greatest trouble is the strong sense of individual self that people carry in all circumstances?

People are beset with great trouble because they define their lives so narrowly.

If they forsake their narrow sense of self and live wholly, then what can they call trouble?

Therefore, only one who dedicates himself to the wholeness of the world is fit to tend the world.

Only one who relinquishes the self can be entrusted with the responsibility for the life of the world.

Dana paramita, according to Suzuki, is “tending to the world” in Lao Tzu’s meaning. This means doing the best you can for all beings without exception. That includes you, but in no greater way than for everything else.

Suzuki says that each of us has two minds. The “big” mind and the “little” mind. The little mind is the mind that keeps us going as organisms. Without it, we wouldn’t survive. The big mind is the unitary mind of the universe. It is this mind that Lao Tzu is speaking of in his final paragraph of the book.

One of whole virtue is not occupied with amassing material goods.

Yet, the more he lives for others, the richer his life becomes.

The more he gives, the more his life abounds.

The subtle truth of the universe is beneficial, not harmful.

The nature of an integral being is to extend virtue to the world unconditionally, and to contend with no one.

Suzuki goes on to explain that we all can tell when the big mind is working within us. That’s where creativity in us comes from. Creativity is one of the great paradoxes in the Western “cause and effect” metaphysics. We are forced to invent “black box” concepts like emergence and complexity to explain it.

But black boxes don’t really explain anything. They merely identify and give a word to a phenomenon which we are clueless about.

Buddhism has no such problem. Human creativity is seen as the same creativity behind the big bang and the emergence of stars, planets and galaxies out of the sea of undifferentiated plasma that first existed. Not a resulting creativity, the same creativity.

If you have any doubts about our having two minds, Suzuki poses a question to you. “Why is it that it feels so much better to give to someone than to get?” I had never thought of that, and though it’s an unproven assumption, I’ve never met anyone who felt differently.

The reason it feels good is that it is the big mind that is doing it…

That truth can be extended to any act of altruism which we may do. It always “feels” right.

The latest attempt by Western science to explain altruism is that morality is somehow encoded in our genes. Maybe so. Maybe it’s just the result of survival of the fittest group. But diehard Darwinists deny that that even exists. How can it? Individual survival is what is key to passing on genes, not group survival.

Buddhism has no such problems. Forgive me, but it simply makes more sense to me than the Western view. Buddhism doesn’t answer all the mysteries, but it doesn’t create any new ones either.

Well and good. What’s this got to do with ayahuasca and Barack Obama?

The title of this book is “Placebo”. My whole idea was to try to cure myself with the placebo effect by using psychedelics to temporarily delude myself into thinking I’d been cured. In order to accomplish this, I’d need to give up the next three months of my life concentrating on myself.

That always felt a bit selfish and wrong. I “rationalized” it by telling myself that if I was going to be any use to the world I’d have to cure myself first. But that simply isn’t true.

Sixteen years ago, in what I refer to as my idealism’s “last hurrah”, I volunteered to work to elect Ross Perot for six months. (Never mind how it came out in the end.) My position was the head of the West coast’s Jewish support.

I’ve been a supporter of Obama since before he even announced he was running. In a later chapter I’ll go into more detail on this. But as a supporter, I sent the campaign a little money and nothing else.

I comforted myself by saying that my son Barak would carry the torch for me this time. The truth is I had lost all sense of confidence and self respect over the last decade. I just didn’t believe I could do much to help, and was way too worried about my health to bother anyway.

What was it Bob said?

You are a rationalizer who makes elaborate excuses and tries to talk themselves and others into believing what you dearly wish was true.

I dearly wished that I could cure this disease and used my cure as an excuse not to rejoin the living. Although he meant to accomplish something else with his email, Bob woke me up to the wrongheadedness of my approach.

There can be no “cure” for me without dana paramita. I know that now. I’m still an idealist, if a bit battered and bruised with time.

The greatest good to the greatest number of beings on the planet will result if Obama gets elected. As far as I’m concerned, he’s the last chance we’ve got of holding the US together… At least over the short term.

So I choose to work full time towards accomplishing that goal. Big mind versus little mind. There’s no contest for me.

In terms of the placebo effect, maybe instead of deluding myself with psychedelics into thinking I’m cured, I’ll rely on the “big mind” to save me. If I contribute enough, I might even start believing that it’s curing me and I’ll enable the placebo effect just the same.

Last Saturday I spent Shabbat with our local Chabad rabbi who’s a friend of mine. We had long discussions comparing Jewish mysticism with Buddhism. It was a wonderful time for me. He’s a great guy to talk with.

In any event, at one point he pointedly asked me, “What is it that you want?!”

A difficult question to answer…

After thinking it over for a while, when I thought of the answer I knew it was right.

“I want to have a clear conscience…”

July 16, 2008 Posted by | Uncategorized | Leave a comment