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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.

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July 16, 2008 - Posted by | Uncategorized

18 Comments »

  1. Joseph,
    You have discovered, as have I, and thankfully many before us, what the medical community refuses to see – that there is a ‘miracle cure’ out there for all sorts of autoimmune illness. I don’t have MS (not yet anyway, officially), but I do have Hashimoto’s Thyroiditis and possibly Fibromyalgia and possibly Crohn’s. I decided back in January that I was not going to sit around and wait for MS to become official, or to allow an more autoimmune diseases rob what is left of me. So I embarked on a mission to have LDN prescribed for me. Achieved success just last week, and the LDN is in the mail. I cannot wait to begin.
    It truly is a crime that so-called doctors (supposedly intelligent creatures) ignore the anecdotal evidence of so many sufferers. So much for their oath of “do no harm”. I believe it won’t be long before the evidence, that is being presented on so many fronts, will at last overwhelm the medics and with a bit of luck a lot of drug companies, and MS specialists, and many others as well, will be out of business.
    I too have a book in mind, though mine is more to do with the misdiagnosis and mismedication that I was subjected to. My book has a working title of “Drug Addict By Proxy”.
    Kind regards, Nettie

    Comment by Nettie Elder | July 16, 2008 | Reply

  2. 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

    Comment by josephwouk | July 17, 2008 | Reply

  3. Joe,
    I echo Dr. Gluck’s sentiments and welcome you to the “LDN Success Club.” LOL
    May your words ring loudly, clearly, and convincingly throughout the land.
    Sincerely,
    Bill Roberts
    Sylacauga, Alabama

    Comment by Bill Roberts | July 17, 2008 | Reply

  4. (Recieved this morning from the leader of the OMGMS group)

    Yeah, ok, that’s cool. You can cite the MS Society, too – they’re reported positive things like the following,

    ” Two groups reported on the use of low dose naltrexone (LDN). Dr. Gianvito Martino (San Raffaele Hospital, Milan, Italy) and colleagues administered 5 mg of LDN to 40 people with primary-progressive MS for 6 months, evaluating its safety and effects on spasticity, pain and fatigue. Five patients dropped out. Significant improvements were shown in fatigue and depression. Transient increases in liver enzymes, urinary tract infections, mild agitation and sleep disturbance were the most common adverse events.

    Dr. Bruce Cree (University of California, San Francisco) and colleagues reported that eight weeks of treatment with LDN significantly improved quality of life (specifically, mental health, pain, and self-reported cognitive function) in 60 people with MS as measured by the MS Quality of Life Inventory. No impact was observed on physical quality of life (such as fatigue, bowel and bladder control, sexual satisfaction, and visual function). Vivid dreaming was reported during the first week of treatment by some patients, but no other adverse effects were reported.”

    It certainly looks interesting.

    Regards,

    Max

    Comment by josephwouk | July 18, 2008 | Reply

  5. Hello from the UK!
    I don’t suppose you have any evidence of anyone with quadriplegia having attempted this?
    I don’t know if this would be “a miracle cure” at those such as me?
    1) supposedly diagnose relaxing remitting 1995 — never having any munitions. Eventually given diagnosis of secondary progressive.
    2) gradually going downhill, since about 1984 (can think of incidences in childhood)
    3) never having had interferon, copaxone — only IV steroids twice. Medication now is only symptomatic relief.
    4) totally quadriplegic now — using voice-activated software.
    I don’t suppose you’ll get back to me — but never mind!
    Many blessings
    Anne CAIN

    Comment by Anne Cain | July 20, 2008 | Reply

  6. Joe, I have been on LDN for over a year, and I was able to resume leading a normal life after a week of taking it. While on Copaxone, all I was able to do was sit on the couch and watch the dust balls fly by. I do think that all the drug companies care about is making money. Did you fall for the big PR campaign the drug companies carried on to brain wash people into thinking that they truly cared about the welfare of the public? You must have. Businesses are only interested in making money. Greed is their only motivation. One of my friends and I have figured out that a daily dose of Copaxone costs about ten dollars to manufacture and distribute. Oh jeez, I forgot about the cost of publishing the hype on it!!! That must be what raises the cost of the drug to about $1800.00! Stay on the bandwagon about LDN. Your advocacy for this drug is very much needed. There are so many people out there with MS who know nothing about it.

    Comment by Laura A. Price | July 31, 2008 | Reply

  7. Been on LDN since April of 2006. Had my fill of the CRABS. They are not a good source of therapy. Not for me anyway. I realize not every therapy works for every body, but it is so unfair that LDN is kept a BIG secret, it seems from so many that could benefit from it.
    All of us are advocates of LDN if we believe in it! Don’t let the other guy be responsible for spreading the word. I built a website about LDN and MS, I was so impressed with my results.

    http://www.freewebs.com/lovelaugh/

    Health and peace to all! Spread the word!!!

    Comment by donna | July 31, 2008 | Reply

  8. Anne, I don’t have your email. Leave it and I’ll give you the best info I’ve got, OK?

    Comment by josephwouk | August 1, 2008 | Reply

  9. HI I HAVE HAD MS FROM 2001 DID NOT HAVE ANY PROBLEMS FOR SIX YEARS JUST DROP FOOT LEFT LEG AFTER NOV 06 DOC MADE ME START TYYSABRY LESION SHOW UP IN NOV 06 FIVE ON MY BRAIN ONE ON MYLEFT SIDE,THREE INFUSIONS OF TYSABRY GAVE ME INFLAMATION OF THE LEFT SIDE OF MY BRAIN AND SPREAD MY DISEASE ALL OVER HAD TO GO RIGHT FROM MY NERO OFFICE TO THE ER FOR A WEEK OF STERIODS,NOW MY ARMS AND LEGS ARE IN SPASAMS.I CAN NO LONGER PICK UP MY RIGHT LEG TO GO UP STAIRS AND HAVE NO ENERGY WHAT SO EVER,DID RESEARCH AND THANK GOD FOUND LDN STARTED TAKING IT SINCE MAY THREE THINS I NOTICE BLADDER ,ENERGY ,BALANCE SO MUCH BETTER!QUESTION HAS ANYONE BEEN IN WHEELCHAIR AND BEGAN TO WALK NORMAL AGAIN WITHOUT THE USE OF A WHEELCHAIR OR CANE FROM BEING ON LDN AND HOW LONG DID THEY HAVE TO TAKE IT BEFORE THEY STARTED WALKING FREELY?THANKS NANCY

    Comment by NANCYNIC | August 7, 2008 | Reply

  10. Hi Joe,
    I have Crohns disease. Diagnosed last year. Sick for several years. LDN has made my health improve so I have almost no symptoms since September 2007. I use 4.5 mg each night, which I make from a dissolved tablet at 50 mg naltrexone.

    I used to have severe Crohns, which gave me partial obstructions a couple of times a month, with severe pain and cramps, vomiting and cold fevers. Had pain every day, including diarrhea, a crazy electrolyte balance and cramps in toes, feet, legs, torsoe, finger and even in my face. I started using 3.0 mg LDN, increased after 4 weeks to 4.5 mg.

    One friend of mine has MS. Her doctor wrote her a script some weeks ago. She will follow this dosage: starting with 1.5 mg, use this for 4 weeks, then increase to 3.0 mg,- 4 weeks, then- if she needs 4.5 mg she stops there. Most of those with MS do it like this.

    Another friend has an auto immune disease: Artheritis temporalis. Short explained: inflammation of the foreheads veins. She tapered off of prednisone, which she has used for a year, with no improvements. Her symptoms was: Having severe pain in her head, loosing her eye sight and having big trouble sleeping at night due to her severe pain. She started to use 4.5 mg LDN. The next day the pain was gone. She has now used LDN for 4-5 months, and is still symptom free. Both my friend and I use nothing else but LDN.

    Greetings from Norway, Scandinavia
    Good luck with your writings!
    From Ingrid, a member at the yahoo ldn group.

    Comment by Ingrid | August 7, 2008 | Reply

  11. I was so amazed at your story. THANK YOU, THANK YOU! We all need to know what works and what can be cheaper than just doing What the Dr’s tell us we have to. I will look into LDN now and dexodrine and Desoxyn, because provigil doesnt’ work for me it gives me a headache.

    Comment by Stephanie Crisp | August 15, 2008 | Reply

  12. I know it hasn’t been that long since you’ve been on LDN, Joe. But I’m praying that it’s continued to stop the symptoms and progression. I almost have my darling man talked into trying it. He said he’s going to talk to his neurologist again. When I told him that if he takes it he’ll have to come off the Betaseron, he said “Then I’ll stop taking it.”

    He’s a pragmatist who’s statistics oriented but he admitted that the anecdotal evidence is difficult to ignore.

    Sending you thoughts for continued good health….

    Comment by Trish | August 20, 2008 | Reply

  13. My wife was diagnosed with MS in 1997 (approx) and has only used IV-steroids – one week protocol and Prednisone at various times. Our first experience with a Neurologist after initial diagnosis was disgusting. After a lengthy talk with the doc we were asked to have seat in the waiting room while the Neuro looked for one of the CRAB-drugs in stock, which we were reluctant about accepting until further research was conducted. We were the only people in the office with the exception of the assistant and it was dead silent. In the background we heard the noise of drawers and cabinets being opened and slammed loudly, when finally the ruckus was broken by the sound of the doc yelling to her assistant at the front desk, “So and so, have you seen the rest of the MS-meds?” The assistant responded negatively, which was the catalyst for this response; “How the hell am I suppose to push this s–t if the reps don’t provide enough stock?”

    At this point the neuro-doc walked toward the front desk and about dropped to the floor when she realized the door to the waiting room area was open and stood there looking at me. I was active-duty military at the time and commenced to dressing her down as we say. I asked for my wife’s medical records and we were outta there. Since then my wife has refused to take any drugs with the exception of the IV-steroids and occasionally Prednisone, which caused more problems than it solved. In March 2008 Kathy and I decided to give Hyperbaric Oxygen Therapy treatment a try, which was amazingly effective after only Day-2 of treatment (Protocol: two dives a day at 2-atmospheres, 60-minutes per dive). After a serious stress induced exacerbation a second treatment was administered, which was only partially effective, but we attribute the deficiency to allow the exacerbation to accelerate without intervention…almost the point of no-return.

    Anyway, Kathy’s physician at Ocean Hyperbarics in Ft. Lauderdale was the first and only to prescribe LDN to Kathy. We started out at 1.5mg for the first 4-wks then shifted to 3.0mg three days ago. Virtually all of Kathy’s imbalance problems are gone, almost 100% of the strength in her left arm has returned, no foot dragging, all this relief for $200.00 for a 3-month supply. We have learned multiple lessons over the years, but one is considered critical; never, ever take anyone’s word as being the gospel, not even physicians unless death is imminent. Always do your own research as if embarking on a thesis of living or dying. Get all the facts and read everything you can get your hands on. Then approach your doctor again and if you are not satisfied with the response, find another and keep looking until you find a doctor that is open minded, caring and displays no sign of professional arrogance and is at least willing to conduct the same type of research that you have. Lastly, we are all responsible for our own health and welfare and most circumstances that affect both; however, in all instances your are as responsible for the healing and recovery process as the doctor you hire to assist you in that endeavor. Unless death is imminent, I highly encourage you to take control of your treatment, make the doctor work for his income like any other contractor and make it a team effort is so doing.

    From a husband,
    Rick

    Comment by Rick | November 29, 2008 | Reply

  14. sounds good

    Comment by monika | December 14, 2008 | Reply

  15. has anyone ever used this for Alopecia Universal?
    has their hair grow back? Alopecia Universal is an auto immune dises that cause the body to attack hair.
    Total hair loss.

    Comment by Mary | June 29, 2009 | Reply

  16. Have you ever treated Alopecia Universal with LDN and if so what dose and for how long?

    Comment by Mary | August 14, 2009 | Reply

  17. Hello.
    I am 40 years old and i got ms in 1998, progressive ms in 2001. the last year i’ve been sitting in a wheelchair, not able to walk any more, only a few step.
    I have been taking ldn for 5 months now.
    i feel much better today, lots of my symptoms have gone.
    I have a question: Are there any other persons who have progressive ms who have been able to get out of the wheelchair after using ldn? I mean walk again?
    It is very important to me to hear from others if they were
    able to walk again after using ldn?
    My stifness in my legs are gone now and they are very week for the moment. I am training my legs every day.
    Best regards Roar

    Comment by Roar Andersen, Norway | April 10, 2010 | Reply

  18. Hi. I have been researching PML complications, mostly drug related ones. So far the best mediatized product that I found was Tysabri. This is the first time I came across LDN. I was amazed to see all the positive feedback that this drug received. It is a shame that knowledge and information abut LDN is soo few and not available in the mass media. Probably this fact is influenced by the large pharmaceutical companies who defend their products. As you explained in your article, it is not hard to understand.

    I`ll do my best to spread this information.

    Comment by PML | October 13, 2011 | Reply


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