Being "Pushy" With Your Doctor

My blog today includes my top 5 Treatment Recommendations outside of Ampligen - things you may need to "push" your Doctor to give you.

Someone asked me recently: "But what can I do if I am not on Ampligen? My Doctor has no suggestions for me!" My response was longer than what I am about to share with you here, but the heart of my answer was "Push your Doctor to let you try things others are using."

Perhaps that seems like a Sisyphean pursuit to you with your physician, like pushing a boulder up a mountain, but I can tell you it's worth the effort.

Because I am a tenacious researcher, I discovered a number of treatments that worked for me pre-Ampligen, by searching published medical journals, doing exhaustive online research in a number of languages, and literally, hounding doctors. I've had the privilege of conversing with at least a half dozen of the leading M.E./CFS specialists in the world, and because I lived outside the USA, had access to some things that weren't available in the states.

Tragically, I'm convinced that for the average patient suffering from this hideous disease, your local doctor who doesn't specialize in this infirmity probably won't tell you about most of these options. But maybe you should at least "push" the question.

If you haven't explored any of these options yet, I encourage you to take "ammo" to your doctor, and basically ask him or her, "any reason why I shouldn't be trying this?"

If they say "why?" you can say: "Because other patients have used them to some success, and I have some research to back it up. And oh, by the way, why the hell not? Don't you want me to get better?" Then hand them your pen and say, "is your prescription pad handy?"

Here are my top five recommendations:

Nexavir (Kutapressin) - Based on the theory that the immune system is dysfunctional in CFS, researchers in Texas rediscovered this immune system adjuvant derived from porcine liver made popular in the 1930's. Kutapressin is an amino acid complex that was first used for Herpes Zoster. I would inject this 3 times a week, and could feel a difference. You'll need to ask your Doctor for a prescription for the vials and needles. Now called Nexavir, this drug was around for so long it didn't even have a patent, and after Schwarz Pharma stopped making it, it was reintroduced a few years ago, and you get it from this company.

Imunovir. Most research suggests that our immune systems are in over-drive...working too hard. Isoprinosine is an immune modulator, probably helping to shift Th2 back to Th1, while also serving as an anti-viral. According to studies, the immunomodulating and antiviral properties of the synthetic purine derivative Immunovir in CFS patients revealed enhanced natural killer cell activity and clinical improvement of fatigue. Lots of HIV positive patients all over the world take this stuff. You can get these tablets by mail from Canada from Rivex Pharma and you take it on a "pulsing" schedule, 5 days on, 2 days off; 2 months on, 1 month off.

B-12 with Glutathione Injections. CFS patients use up B-12 and glutathione in our systems very fast, and glutathione depletion is a problem. Read more here. With a few other ingredients added this treatment is known as a Myer's Cocktail and has been used by many CFS doctors for years. Here's the recipe if your doctor or compounding pharmacy needs it. I self-injected B-12 and Glutathione and always noticed a difference when I stopped. You'll need a script from your doctor, but you can self inject.

Moclobemide. This is one of the first anti-depressants ever developed, and is a reversible MAO inhibitor - acting on the serotonin in our bodies. Remember the virus is said to be in our CNS and brains, as well as our stomachs, so it helps your serotonin balance. It's not that we are sad, we just have screwed up brain chemistry. Did you know that there are serotonin receptors not only in your brain, but in your stomach as well? This drug helps keep the serotonin you've got, working. Taken in recommended doses, Moclobemide does not mess with tyramine and does not give you the "cheese effect," so diet is not an issue as with other MAOIs. There are absolutely zero side effects relative to libido or sleepiness, and it is available everywhere except the USA- not because it doesn't work, but because the drug monopolies want to sell you Prozac. Research shows it works as well or better than the newer ADs. And because it is reversible, I found it to be easy to manage. In Canada or Australia Doctors know it under the brand names Aurorix or Manerix.

Topical Ketamine. For pain emergencies, like unbearable migraines, this is the best reliever out there in my view. It's called a "dis-associative" in that unlike most pain relievers, it basically doesn't work on the pain itself, but rather just the "pain signal" in the brain. It chemically "unplugs" the message that tells you your head is killing you. As documented in "Betrayal by the Brain, Dr. Jay Goldstein pioneered the use of topical Ketamine for CFS patients, and you can ask your Doctor to order it from a compounding pharmacy. Don't freak out by the "bad rap" and misinformation about Ketamine ...face it, most drugs that work on pain could be sold or used on "the street" for nefarious purposes. But on the few occasions when I was vomiting due to migraine pain, the Ketamine "gel" gave me relief. And unlike opiates, which tend to be Th1-Th2 shifters, Ketamine doesn't affect your immune system at all. It's also been reported in Journals as being a very effective anti-depressant as well. But I only list it here for the pain relief factor. I probably used it less than 6 times a year, but when I was desperate, it literally saved me.

Today, I take none of the aforementioned anymore, except a small dose of moclobemide. The Ampligen is the job now, and the protocol requires that you not be on any of these types of immunomodulators while you are in the I couldn't take them even if I wanted to. But these were a lifesaver to me before I started Ampligen. Here's a nice summary of perhaps why.

As I've shared in other posts, the reason I have taken the radical step of uprooting my life and family and moving to a foreign city to get Ampligen, is that I decided I needed to be almost militant about saving my life. If that means we are considered "selfish" by the occasional nurse, or "pushy" by a Doctor, so be it.

In my view, "pushy" is better than "so sick I can't move."

As always, please do support this site, and participate by adding comments or questions. Thanks!


Thank you for sharing your experiences with us. I am green with envy that your circumstances allow you to get Ampligen, and at the same time I am grateful that you can. I hope that your experiences, and those of others on Ampligen, will eventually make it available to the rest of us. I always enjoy your writing as well as the very informative content. Keep up the good work.
I love the line, "don't you want me to get better?" "Is your prescription pad handy?" Laughing here. You have a dry sense of humor...sort of wicked. I like that. I do too. Sick or not, laughing lets me know, "I am still here." I think I tried kutapressin years ago. I have done the Meyers push. Glutathione made me oh so sick. I like all of these suggestions however and am glad you are informing everyone of this. It is true, we do have to push our doctors because if not, they don't do what is needed. I try to be nice, but my last office visit, I read my doctor a letter on how angry I am at him for not getting back to me, for asking me what my friend who is a naturopath thinks (clearly making him seem like he has no idea what to do) and for just being too damn busy to take the time and deal with the "complicated" person I am. He wasn't upset, he understood and at the end of the day, I didn't care because it's how I feel....and it felt so GOOD telling him! That was the best medicine. Releasing it.
Hi again. Do you have an opinion on low dose naltrexone and how it might act or react with any of the therapies you have mentioned above?
Thanks for the kind comments and encouragement. I really have no experience with LDN, and I haven't done much research on it. What I like about it in theory is that it is also an immune modulator, which was a category of drugs that I had success with before Ampligen. There is LOTS of research from Europe on this treatment; you might start here: Scroll down to the research reports. I'd be interested in your experience if you go that route. Thanks!
I was on LDN and could not sleep. That was one of the side effects. My immune system tanked. I had to get off of it.
I've read all the sites on LDN and started it less than a month ago. From day one, I slept better and had better mood. My energy has increased a little. There is a thread here on PR where we who are doing LDN post.

That it is an immune modulator, has no serious side affects and is very cheap are what attracted me to try it. That it is supposedly an opiate receptor agonist is also interesting, after reading your one of your links. (Already forgot which one, sorry.)

I have remembered some dreams for the first time in decades and am sleeping more, in a natural sleepiness that is different from the exhausted but too wired to sleep kind of exhaustion that has characterized my fatigue for decades. Others have reported dreams, too, including erotic/amorous ones, ha ha.

Spitfire, many PWCs have had to start very low and increase very slowly. IE, start at 0.1mg.
thanks for your tips kelvin. hope it helps some patients who cannot get the ampligen. i have never taken any chemical drugs for my cfs though .

edit: after reading some accounts of moclobemide on german depression boards i really wonder if that is really a recommendable anti-depressant. some said it helped them,some were experiencing very bad mood swings, others suicidal thoughts .
i for instance take 900 mg st.john's wort extract , pharmacy quality, and it helps very good with balancing neurotransmitters ...

Blog entry information

Kelvin Lord
Last update

More entries in User Blogs

More entries from Kelvin Lord