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.